The Unforgettable Fund Blog

New website on its way

2009-11-07T21:22:00.004-05:00

This is the weekend! The website (www.theunforgettablefund.com) is being overhauled! It's been a long time coming, but nothing good ever happens quickly, or so they say.

It's been a really hard year for fundraising in Palm Beach County. The market, Madoff, and an imploded housing market has slowed The Unforgettable Fund to a crawl.

I am meeting with Scripps Florida on Friday. They have asked me to be part of their Alzheimer's presentation in January. Not only am I happy to do this, I'm ecstatic there will be an entire auditorium full of people who are in a postition to help. They will be given all that I've got, every last bit of it, to help convince them to be part of this effort.

Anyone have any thoughts on what to present? How to present? I'd love suggestions. What would make you respond? What can one say or do that would motivate another to give?

A Brief Dream

2009-06-03T16:22:00.004-04:00

I don't often dream about my father but yesterday I did. He was in a white guayabera. He simply said, "Don't be like me. Be instead of me."

I've been pondering that all day.

Any thoughts?

2009-05-02T23:36:00.002-04:00

And here are some more. It opens with this - and nothing more.

When a viewer clicks, this appears.

And then this is what a text page will look like.

Of course, these are first thoughts. Would love to have your help in comments. Now is a really good time to go anonymous if you're afraid of hurting my feelings. As a designer, it would be really hard for me to not take criticism as anything but helpful. How can designers do that? What doesn't help us, we ignore!

Thoughts on the New Web Site

2009-05-02T23:26:00.002-04:00

Here is a sample page of the new web site that's under construction for The Unforgettable Fund. I would love your thoughts about this look. Or look, if you'd like to share your thoughts, I would love that. Or you know what I mean.

New website on the horizon

2009-05-01T16:34:00.003-04:00

We have a new website in the works for The Unforgettable Fund. Keep checking back...

Unforgettable Fund Thanked and Thanked Again

2009-04-24T16:28:00.003-04:00

And even more news on the research front - Remember last year when we learned that our first intern, Marie Neant-Fery, in Dr. Malcolm Leissring's lab was first author on a distinguished Alzheimer's paper? Well, it's happened again, this time with our second intern Christelle Cabrol, who also was first author on an important paper just published in PLoSOne .

And if that isn't awesome enough, there is this second to last paragraph in Science Daily that should make everyone who donated to The Unforgettable Fund stand up and take a bow. Applause. Applause.

Apparently, we're mentioned - for the second time in a published paper - as funders of this important research. And I quote from the paper itself:

"Funding: Supported by grants from the National Institutes of Health (AG030718 and DA024888 to MAL and AG012749 to DJS and MAL) and by a generous donation from The Unforgettable Fund (to MAL and CC). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript."

More applause! More applause! But really, the woman I would like to thank is Marcia Nappi.

Last year, Marcia Nappi donated $5,000 to The Unforgettable Fund to be used specifically for Malcolm Leissring's research. She had met Malcolm at an event being held by the Alzheimer's Association. She was so captivated by his avenue of research, his passion for the subject and his relentless drive, she wanted to in some way help his investigations into Alzheimer's disease. She did just that with her well-applied generosity.

By funding interns in Malcolm's lab at Mayo Jacksonville, The Unforgettable Fund accomplishes three things:
1) We spread knowledge at the most affordable level
2) We free up a lead investigator's time to accomplish more
3) We directly impact the amount of research being done in an Alzheimer's lab.

This summer, The Unforgettable Fund will be funding two more interns at Mayo Jacksonville - Sabrine Hedouin and Ana Vaquer-Alicea - both from the University of Paris. We have no way of guaranteeing they will publish their findings as our first two interns have, but that seems to be the high bar their predecessors have set.

If you are interested in helping with this effort, and want your donations to go directly to scientists doing Alzheimer's research, please visit The Unforgettable Fund and donate! You'll be taking a bow before you know it!

CURNA - Dr. Claes Wahlestedt's spins off lab from Scripps Florida

2009-04-24T12:13:00.004-04:00

Here is the web site for CURNA, the spin off lab formed by Dr. Claes Wahlestedt in Jupiter, Florida. While it's not the first spin off out of Scripps Florida, it is the second. And it is the first that uses purely local talent. And what's even better, two of the lab techs are students from Palm Beach Community College.

Ten years ago, the idea of local CC students working in the field of biotech in the state of Florida was laughable. One needed to work the tourist trade - waiter, waitress, line cook - or work in agriculuture because that's what Florida did for a living. Our scientific minds went to scientific destinations - none of which were in Florida.

Not so anymore - we have Scripps Florida in Palm Beach County, Torrey Pines in Port St. Lucie, Burnham in Orlando, to name just a few. We can also add Max Planck to the Jupiter roster. The economic terrain has been transformed in the state of Florida. We have tremendous potential to massively contribute to the understanding of how to keep human beings healthy, to reshape the path of drug discovery, and to make better informed decisions about our personal healthcare, that of the nation, and of the world. Big heady talk, especially for those of us who came to Florida years ago from major metropolitan areas. Can this really be happening in Florida? Apparently, it is. In Jupiter, they are no longer stupider.

If you don't follow biotechnology and science, and the only reason I do is because my father was so sick for so long with Alzheimer's disease, these names might still sound familiar to you - they've long been the leaders in scientific research. What's new is that they've come to my home town. I marvel at Scripps Florida - my husband works at Cooks, right across the street - especially at night when the streets are quiet. It seems to be running 24 hours a day, and looks to be, literally, the flag ship of scientific discovery with a spire that reaches into the sky, poking the heavens for answers.

The Unforgettable Fund contributes to the Alzheimer's research of Dr. Claes Wahlestedt at Scripps Florida. His lab is somewhere in this building...

Eagles fly to Jupiter

2009-04-24T12:04:00.005-04:00

On Monday, April 13, a small contingent from Ft. Lauderdale's Fraternal Order of Eagles winged its way north up I-95 to meet with The Unforgettable Fund and to tour both the Alzheimer's lab at Scripps Florida and the Curna Lab at Alexandria Innovation Center in Jupiter.

What would bring this group out of its comfortable nest in Broward all the way to Abacoa? These women want to fight Alzheimer's disease and have taken up the cause by supporting the Alzheimer's research of Dr. Claes Wahlestedt of Scripps Florida and Dr. Malcolm Leissring of Mayo Jacksonville.

Since 2008, their F.O.E Aerie 3140 has donated a total of $13,000 to The Unforgettable Fund, a 501c(3) charity founded by Patty McNally Doherty of Palm Beach Gardens after the death of her father in 2006. This charity is able to donate every penny raised into the labs of Dr. Wahlestedt and Dr. Leissring because everyone who works with The Unforgettable Fund works for free. And for this luncheon, that included the chefs at Cooks on Main Street in Abacoa.

They donated a three-course instructional luncheon, with fresh mozzarella salad, an entrée of grilled vegetables with goat cheese, seafood quesadilla, and mini portabello/sirloin burgers, followed by a chocolate paté with Apricot jam quinelles.

With a meal like this, Cooks' guests were not able to eat like birds...

F.O.E. Pig Roast II for Alzheimer's

2009-04-24T09:36:00.007-04:00

It never fails to make me smile when I think about the Fraternal Order of Eagles and their Pig Roasts. Each year, for the past two years, they've invited The Unforgettable Fund to join them for a BBQ beyond compare - pork, baked beans, black-eyed peas, salads, desserts - a huge spread that never seems to run out. The pig is roasted right behind their Aerie in a long, slow process that produces the most tender pork you could imagine.

Long lines form inside as diners wind their way through the kitchen. Having been their guests of honor last year, we knew not to eat ahead of time and were much better prepared to dine with the best of 'em.

Dr. Claes Wahlestedt of Scripps Florida returned for year two with his wife Lisa and their two children. Dr. Malcolm Leissring of Mayo Jacksonville was under deadline applying for a stimulus grant and was afraid if he drove down from Jacksonville that he wouldn't get it finished by Monday - but he texted during the event to check in.

My mother was as amazed as ever by the outpouring of caring and concern that the members of the F.O.E have for people they don't even know and a man they never met, my father. This group is motivated by compassion for those who have no memory of them - I have trouble imagining a more noble cause than Alzheimer's. The people you help the most won't even remember you cared.

When dinner was over, Stephanie and Linda awarded The Unforgettable Fund a check for $5,000 to be used for Alzheimer's research in the labs of Dr. Malcolm Leissring and Dr. Claes Wahlestedt. We are all incredibly grateful and appreciative of the effort made each year by this great group of people and their unwavering support of this research.

And, as promised, here are a few pictures:

Stephanie, Patty and Linda with $5,000 donation.

Patty and Claes

My mother, Gertrude, saying a few words to the crowd.

The young Wahlestedts having a great time.

The Second Annual Pig Roast at the F.O.E.

2009-04-24T01:58:00.002-04:00

I just wanted to post this quickly, I've got just a few moments. The F.O.E threw another one of their outrageous Pig Roasts on Saturday night and awarded a $5,000 check to The Unforgettable Fund. I promise to post pictures tomorrow and to explain why we hold this group so near and dear to our hearts.

I also thought it was time to update the look of the blog so I posted a picture of my family, all seven of us with my mother and father - back when we all remembered who we were and where we were headed. Boy did that ever change...

I'll be back tomorrow.

2009-04-21T23:20:00.002-04:00

I miss my father.

The Elsewhere

2009-02-19T20:21:00.001-05:00

I got a phone call the other night from a distraught woman in California whose father had just been diagnosed with Alzheimer's disease. A few days later, I received a phone call from another woman whose father in Wisconsin had just been diagnosed with Alzheimer's disease as well. Yesterday, a woman left a comment on the blog. Her father has Alzheimer's too.

I shake my head, put it down on my desk, and wonder when will we stop this disease. I pick it up and bang it gently over and over again - When. Will. We. Stop. This. Disease.

When I started blogging about Alzheimer's, I chose to follow a small selection of what I felt were well-written, sincere journals of ordinary people doing the extraordinary work of caring for their parents, most of whom all had Alzheimer’s. It is an odd feeling, three years later, I'm not sure how to describe it, to know all of their parents are now dead.

First, Mona's father died, before I started reading her blog,
Then Bert's father died in 2007,
Then Deb's mother died in April 2008
Then Mike's father died in September 2008
Then Gail Rae's mother died in December 2008
Then Mike's mother died in December 2008.

I imagine them all to be at the Elsewhere Bar, in an eternal state of good cheer, pointing us out to each other, filling in the blanks of who we really are.

Alzheimer’s has no cure, no effective treatment, and no real promise that something is right around the corner. It takes time and money – the less money, the more time - to push science forward and with funding being slimmer than ever, we can only surmise it's going to get worse before it gets better. Pessimistic? No, I am an eternal optimist. But I have been tempered by the disappointment of a reality that says there is not enough to do enough of what needs to be done. Not in time for the children of these parents, anyway.

Enough is enough. What is the DEAL with this disease?

I'll keep asking and I hope you'll keep donating to The Unforgettable Fund for Alzheimer's research.

FROM THE VAULT- Year end summary

2009-02-03T12:17:00.003-05:00

Hello,

I wanted to provide an update about the donation activities.

For the year ending December 31, 2008, The Unforgettable Fund, Inc. received $13,790.00.

Each year is itemized below:
2006 : $12,948.52
2007 : $13, 080.00
2008 : $13, 790.00

Total : $39,818.52

All the volunteers involved with The Unforgettable Fund, Inc. would like to thank each and every individual for your kind donations. Rest assured that your money is going straight to the lab for Alzheimers research.

Thank you.
Allan Doherty

Published Papers, Published Thanks

2008-07-23T12:12:00.005-04:00

While July's From the Lab blog entry by Dr. Malcolm Leissring deals with explaining the "Molecular basis for the thiol sensitivity of insulin-degrading enzyme" an important paper issued by his lab and published this month in the very prestigious journal Proceedings of the National Academy of Sciences, I want to talk about one, little, tiny part of this scientific work that I have under my microscope. Here is a picture of it:

In the "Acknowledgments" section of this research paper, you can find The Unforgettable Fund.

Meanwhile, Dr. Claes Wahlestedt and his crew published their work in a paper entitled "Expression of a noncoding RNA is elevated in Alzheimer’s disease and drives rapid feed-forward regulation of b-secretase" in the July issue of Nature Medicine, which, according to many, has the highest so-called impact factor in all of medicine.

This is the work, the incredible result, of two labs dedicated to fighting Alzheimer's disease. And these are the two labs to which The Unforgettable Fund donates.

These two published papers - two sterling examples of Alzheimer's research - were made possible, in part, because of your help, your donation, your time, and your effort. That's huge. While The Unforgettable Fund may not hand out fancy plaques or have grand parties to lavish praise upon our donors, we offer you this small token of the incredible opportunities your generosity created, and continues to create, for Alzheimer's researchers.

Right now, while you're at your computer, print out this Acknowledgment, fold it up, and carry it in your wallet. Refer to it often, and know that your contribution makes Alzheimer's research possible. Feel proud. You did this. You are what makes The Unforgettable Fund just that - an unforgettable fund.

Great, great job everyone!

Patty

From The Lab -- July

2008-07-16T09:26:00.005-04:00

By Dr. Malcolm Leissring, Mayo Clinic Jacksonville

I am pleased to announce that work in the lab, supported by The Unforgettable Fund, was just published in the pages of a very prestigious journal: the Proceedings of the National Academy of Sciences!!

The first author of the paper was Marie Neant-Fery, a summer intern from the University of Paris. Those of you who kindly donated to The Unforgettable Fund supported her internship, and so in a very real way contributed to this very important study. Thank you for your generosity!!! We have another student in the lab, Christelle Cabrol, also from the University of Paris and also paid for by The Unforgettable Fund, so we're hoping for a repeat performance.

The title of the paper is “Molecular basis for the thiol sensitivity of insulin-degrading enzyme”, which probably isn’t to revealing to many readers of this blog, so allow me to translate. As most of you following my work will know by now, insulin-degrading enzyme (IDE) is an enzyme that can degrade the amyloid ß-protein (Aß), the sticky protein fragment that accumulates in the brains of patients with Alzheimer’s disease. Because IDE degrades Aß, anything that makes it work less well could lead to elevated Aß, which is known to cause Alzheimer’s disease. There’s some evidence that IDE does indeed work less well as we age, something that may directly link Alzheimer’s to the aging process.

It turns out that IDE is inactivated irreversibly by certain chemical reactions—oxidative damage, essentially—that we know occur increasingly with age. The fact that IDE was vulnerable to this kind of damage was known in a general sort of way, but we did not know exactly what the cause was. In this recent paper, we showed exactly how this oxidative damage occurs in IDE, at the detailed, molecular level. This is a classic example of “reductionistic” science—that is, science that seeks to get at the absolutely most fundamental possible description of a phenomenon—in this case, the molecular basis for IDE’s thiol sensitivity (hence the title).

Knowing these details is important for a couple of reasons. First, it solves what was a decades-old riddle. IDE was originally misclassified as a very different type of enzyme based on its sensitivity to the particular kind of oxidative damage studied in this paper.

Second, and more importantly for our understanding of Alzheimer’s disease and possibly also diabetes, we now know precisely the kind of molecular changes that will inactivate IDE, which will enable future studies aimed at stopping this process or understanding things that trigger it. Potentially, it could lead to the development of biomarkers for IDE function that may indicate risk for disease.

Third, rather unexpectedly, we learned a very interesting thing about the way IDE functions. IDE has 13 cysteines (damage-prone amino acids), which are located all over the molecule (see Figure). To figure out which cysteine(s) was/were most vulnerable to damage, we made mutants of IDE that contain just a single cysteine—with the other 12 mutated to another, damage-resistant amino acid. These “single-cysteine” mutants could be treated with a certain chemical, which would cause that chemical to attach itself to the cysteine residue, the location of which we knew precisely.

It turns out that chemically modifying one cysteine in particular (Cys590) leads to a very surprising result—it causes IDE to degrade Aß faster! More important still, this same chemical modification had no effect on IDE’s ability to degrade insulin. This result is important, because it suggests that we might eventually be able to discover drugs that accomplish the same thing—which is exactly what we want to treat Alzheimer’s disease.

Back to work!

A Rare Bird - Ft. Lauderdale F.O.E. #3140

2008-04-28T22:41:00.013-04:00

What does one wear to a Pig Roast? For days, I tossed this question around and came to the conclusion that whatever I wore, it would have to be pink, in honor of the pig. And so I found my pink shirt, my blue jeans and off I went to find the Ft. Lauderdale F.O.E. # 3140.

Buried deep in the heart of this city, almost in the shadow of the I-95 overpass, nestled between two boat parking lots, sits a most unassuming building. Don't be fooled by the toned down entry way, through this door you'll find some of the biggest hearts in the state who pride themselves on throwing one heck of a party.

We rang the bell, signed our names, and opened the door to complete and total good cheer. We were welcomed with open arms and hugs. You would think we were life time members returning from a long journey, instead of a group of stunned travelers from Palm Beach County. We were given a tour of this small Aerie - here is where the pig is roasting, there is where the buffet is set up, table after table is squeezed in with decorations, sparkles, knives, forks, and napkins. We sat elbow to elbow and enjoyed the best BBQ pork, baked beans, potato salad, cole slaw, pasta salad, deviled eggs, this kind of pie, that kind of pie, every kind of pie you could imagine. It was simply incredible - all the more so because they did the cooking themselves! No caterers, no hired help. It was the members of the F.O.E. doing what the F.O.E. does - people helping people.

And speaking of people, the place was packed with all kinds, all kinds of backgrounds, all kinds of outlooks - a scientist next to an auto mechanic, a school teacher next to a film maker, a writer next to a nurse, an artist next to a lobbyist, an Irishman next to a great grandmother - all under one roof for one reason - funding Alzheimer's research.

For those of you familiar with The Unforgettable Fund, you know we're the cheapest charity on the planet. We don't spend a penny of donor money on anything, it all goes to Alzheimer's research. This group, the F.O.E #3140, presented a check of $5,000 to The Unforgettable Fund, with the promise of another check of $3,000-$5,000 in a few weeks. That makes a possible total donation of $10,000. And all from one small, but very dedicated group. Can you believe that? We're so completely blown away by their effort.

Throughout the night I kept thinking, "Imagine if every group across the nation did this?" Every Alzheimer's lab could be fully staffed and completely funded, running experiments 24/7, collaborating in shifts, getting to the bottom of it. Imagine if the nation decided, as we did when we put a man on the moon, that we would cure Alzheimer's disease in 5 years. Here's the money. Get going. Instead, labs are closing, scientists are unable to fund their work. We can’t wait for sweeping legislation, it's not coming. We need to find a cure for this disease because we have an enemy and it's not Alzheimer's, it's time.

All is takes is the kind of effort the F.O.E.#3140 made. All it takes is the same determination we showed as a nation when we looked up in space. All it takes is the belief it can be accomplished. I believe it can be, the F.O.E has shown it can be. All we need to do is do it.

Granted, the F.O.E. makes it look easy. But I know how much work it took. They spent months preparing for this one night, raising money, selling Jello shots, hosting Karaoke nights. When they presented The Unforgettable Fund with what they had collected, in the warmth and love of their Aerie, it almost made me burst into tears. This wasn't a big lavish gala at The Breakers - it was much, much more than that. And here are the pictures to prove it.

On wings of local eagles

2008-04-12T09:57:00.015-04:00

Before I tell you an amazing story, I want to let you know that in March, The Unforgettable Fund donated $2,000 to Dr. Claes Wahlestedt at Scripps Florida for his Alzheimer's research. We've also agreed to give Dr. Malcolm Leissring at Mayo Jacksonville $4,500 to fund a top-notch research assistant in his Alzheimer's lab for the months of June, July and August. He is going to be posting about this shortly.

Everybody, take a bow, imagine thunderous applause. You did this. You made this possible. Every penny went right to where it's needed most, in the lab. And that's the role The Unforgettable Fund plays - getting donations directly to Alzheimer's researchers.

Which brings me to the amazing story I mentioned earlier. About two months ago, Linda Rotman from Ft. Lauderdale called me and asked for The Unforgettable Fund credentials, documentation of our 501c(3) non-profit status, and our mission. She had read Sally Apgar's Sun-Sentinel story in November 2007 about The Unforgettable Fund. I sent the information she had requested and that was that.

Well, this past weekend, Linda called again. She was so excited to tell me the news! And now I'm so excited to tell you! Her organization, the Fraternal Order of Eagles 3140 (the F.O.E to regulars) in Ft. Lauderdale has raised a substantial amount of money for Alzheimer's research and their national organization, the Grand Aerie, is awarding The Unforgettable Fund a grant of $5,000 with an additional grant to be announced on April 26, the night of their famous pig roast! I can't tell you how long it's been since I've used so many exclamation points in one paragraph! I just love this story! Linda, along with her co-chair Stephanie Livesey, got out the word about Alzheimer’s and made a most incredible thing happen by doing what it is they do at their club - they cooked, had karaoke nights, played games and cards, Linda said she's never cooked as much as she has in the past month! I'm so taken with their effort that I can't find the words to adequately express how we feel. We're just blown away.

Malcolm is coming down from Mayo Jacksonville, Claes is coming from Scripps Florida in Jupiter, Barbara Noble is coming from Scripps Florida, too. Sally Apgar is coming from the Sun-Sentinel, Anita Mitchell is coming from the mighty, mighty Mitchell Group of West Palm Beach, and, of course, my mother, Gertrude, is coming, too. And from the City of Winter Garden, a contingent is planning a trip down made up of Dolores Key and Andrea Vaughn. Adding to the party, Chris Mee, son of Richard Mee, our original honorary board member, is coming as well. Susan Shepard, our science translator, will be coming, too, along with her mother Riba, who needs no translation.

I will be bringing the camera - I'm not sure what one does at a pig roast but I can't wait to find out - because I want to post pictures of the event on this blog. I want to see if a photograph can in any way capture for all of you the kind of enthusiasm, generosity and awareness the F.O.E 3140 of Ft. Lauderdale has raised. Does it get any better than this? Be sure to check back after April 26!

My mother rocks...

2008-04-05T22:22:00.004-04:00

...literally. She rocks babies every Wednesday morning for an Easter Seals nursery. Early in the morning, her girlfriend Jeanne picks her up. Between the two of these women, they've given birth to and raised 16 kids. They drive the back roads to get to the nursery, staying off the Interstate and avoiding the traffic of snowbirds and tee times. They've been doing this for about six months and it's so funny to hear my mom talk about it. She has first-step stories, and tumbles and crawling tales. She has something to say about each little infant.

Her job is simply to rock them. She cradles each baby in turn, calming the criers, soothing the teethers.

It fills me with great hope that in this cold and jaded world there are people like my mother and her friend who are so loving they actually change the world around them, armed with nothing but lullabies.

She can calm any baby, including me, one of her biggest. (Just wanted to say I love you Mom and how proud I am to be your daughter.)

Love,
Patty

It's coming, for certain

2008-03-20T10:56:00.001-04:00

The number of people who will be impacted by Alzheimer's disease in the coming years will be enough to sink the economy of the United States. The most powerful nation in the world has no defense against this disease. There is no "abstinence" so people won't catch it. There is no "healthy" approach to living that will spare people. There is no vaccination protocol to up your odds.

There is nothing you can do to avoid this. Just as you sit and wait for the sun to surely rise each morning, you will sit and wait for Alzheimer's to knock on your door.

This, to me, is unacceptable. We allow this to be "the-way-it-is". We tolerate inaction, the blind eye and deaf ear of the great majority of US citizens.

I'll keep standing on my street corner rallying the cry - WE WILL NOT ACCEPT THIS - until someone listens. I'll keep my little beggar can out there pleading for donations to fund Alzheimer's researchers. I'll keep writing.

Alzheimer's is CURABLE, it's TREATABLE, it's BEATABLE. But the Alzheimer's scientists in their labs are the ONLY ones fighting. And they say they are only funded to do about ten percent of the research they need to do. At that rate, we're destined to be the burden on our children that will crush them.

It doesn't take a crystal ball to figure out this beast of a disease is coming. It doesn't take an economist to figure out we can't afford to deal with it. It doesn't take a politician to figure out a sick aging population will crush the "future" of American youth.

It takes us - you and me - to turn this thinking around. We've been through it. We've lived it. We know in a way we wish we didn't, what this disease REALLY means. We know exactly what we're talking about. And if those who have been through it don't warn the others that are headed this way, we shirk one of our greatest responsibilities - to be our brother's keeper.

Soapbox speeches on blogs seem truly pathetic, but I keep imaging someday, someone with the power to turn things around will stumble upon all of these writings and listen. They'll see my little beggar can and donate. They'll get behind the solution before they become the problem.

Again, thank you for the opportunity to bring this up. There are no easy answers but one - put your money to work in the labs that are fighting this disease. And if you're interested in doing that, go to www.theunforgettablefund.com.

Patty McNally Doherty

2008-02-09T12:26:00.000-05:00

What a great idea my friend Bert had. She asked us to list things to say or do when someone has Alzheimer's. She's going to put suggestions together in a pdf so people can download it and print it out. For free. Add your suggestions at her site or add them here and I'll get them to her.

I have many, many things I would like to put on this list. I think there are as many good ideas as there are people with this disease.

1. Be brave always. It takes a lot of courage to support someone through this disease.

2. Be honest. Don't pretend to be what you're not. If you can't handle it yourself, ask and INSIST UPON getting help. And don't be polite about it - you'll sink like a stone if you don't put on your swimmies. GET HELP.

3. Be patient. It's a long haul of a disease.

4. Be understanding. You will never unravel the mind of a demented Alzheimer's loved one. Instead use your OWN memory to recall their qualities.

5. Be agreeable. Don't argue, you can't win. Insteand, agree agree agree. Yes, you want to take a walk. Yes, it's the middle of the night. Yes, we'll have a snack instead. Yes, this is perfect. Yes, you can sleep with your shoes on. Yes, you're exactly right about this. Yes, I love you, too.

6. Speak respectfully. These are grown adults, who have lead long, challenging lives. They are NOT children, they are NOT idiots, they are NOT to be spoken to like children, they are not to be spoken to like idiots.

7. Don't yell. Just because someone can't understand you doesn't mean they're deaf.

8. Touch, hug, hold hands, pat, rub, kiss. Touch again, hug again, hold hands again, pat again, rub again, kiss again. Repeat often. Again and again and again.

9. Smile. Laugh. Smile. Laugh. Be the light that walks into a dark room. Be the smile that eases anxiety. Be the cause of laughter.

10. This is NOT your disease. You can breathe and run and plan and remember. Stay attached to the world around you.

11. There is nothing shameful about this disease. And anyone who doesn't get that cannot serve as a swimmie. You'll sink if you lean on someone who has no buoyancy.

12. Resentment will eat you alive if you have siblings that don't care. Release them. You have enough to carry right now without the added weight of "he was mom's favorite and he doesn't even return my calls". Let it go for now. It's a weight, that's all. Deal with it later, for now, if you're going to stay above water, you have got to kick off the old, smelly, waterlogged, boots. Let it go. Kick your feet. SWIM! You can do this!

13. Stay sober. I mention this because it's a really easy time to self-medicate. This disease hurts a lot. But you stand a better chance of actually helping if you're actually standing.

14. Be proud of what you're doing. There is no higher standard to hold oneself to than this - honor your parents.

15. Love never fails. This disease will show you what you're made of. And if you're anything like me, you'll be surprised how inadequate, incompetent and unqualified you'll feel. No one walks into this willingly. Not the person with Alzheimer's, not the spouse who survives, not the kids who find themselves shoved into the role of parental advocate. We're all attached and we ALL go into the drink when Alzheimer's pushes someone in. The stronger the tie, the more certainly I can say, you're going off the deep end. There are no landmarks, there are no buoys, just lots and lots of water - in the middle of the living room! In the heart of our homes, we're submerged!

It takes time to learn to swim in this water. Five million people have Alzheimer's, and figure most of them are attached to at least one other person. THAT'S TEN MILLION PEOPLE!!! One minute you're on dry land, the next minute you're really wishing you had built a boat.

16. Help the boat builders. Fund Alzheimer's research. Find scientists who are doing Alzheimer's research and get as much money DIRECTLY to them as you can. I started The Unforgettable Fund to do just that. After I washed ashore when my father died, I looked back at the ocean I swam in for eleven years and said - THESE PEOPLE NEED FRIGGIN' BOATS!

17. Do what Bert, and Mike, and Mona, and Gail Rae, and Deb, and Jewbu, and so many others do - tell the tale. Keep telling the tale. Keep spreading the word. Keep talking. Keep shouting. Keep remembering.

That's it for this morning. Please take what you can use, and leave what you can't.

Ending 2007 on a wing and a prayer.

2008-02-01T01:14:00.000-05:00

In November, 2007, Sally Apgar of The Sun-Sentinel (one of our local South Florida papers) wrote a story about The Unforgettable Fund. She did such an amazing job, we have received over $6,000 in donations which will be donated to Dr. Claes Wahlestedt at Scripps Florida, our “local” Alzheimer’s researcher, on Monday, February 2. A few were large donors, but the great majority were a bit above or a bit below $10. I was overwhelmed with the generosity and heartfelt messages that these donors included with their checks. Many of them knew first hand the great loss Alzheimer's causes. Many lost spouses, friends, co-workers. An entire tennis team donated in the name of a member's mom. One man included the most lovely pictures of his wife, before and after. So many donated in the names of their mothers and fathers, husbands and wives. A son - whose father helped him as a partner in his business, and who now has Alzheimer’s - donated to The Unforgettable Fund instead of buying corporate gifts for his clients, sending them a card to explain. My friend and fellow Alzheimer’s blogger Bert from “Had A Dad” lost her father and a friend found us and donated in his name. So many people. Don’t know if it’s of comfort or not, but if you’re dealing with Alzheimer’s, you’re really, really not alone. There’s just too many of us, aren’t there?

I wish to respect the privacy of these donors. In order to share their words with you, I will have to do so anonymously. I hope you hear the many voices that stand behind these words. I have a feeling they'll sound very familiar to many.

"My wife was a wonderful, beautiful gal - and we were married sixty years - she repeatedly beseeched me with her frightened, confused, questioning, "Will you take care of me?" - Jack F.

"Thank you for caring. I hope there is a cure." - Morton T.

"Thank you for providing me with a way to make a direct contribution to scientists who are working on a cure for Alzheimer's disease. My best friend died from this disease. It was so sad to watch her decline." - Jean C.

"Best of luck in continuing your good work." - Denise D.

"Wishing you much success in your quest for the Alzheimer's solution. It will be the greatest "mitzvah" to the people of our world in this century." - Norman G.

"Your story was most touching. I am 94 and a WWII veteran. I've seen so many of my dear friends suffer. Good luck and I think you are wonderful." - Yale N.

“Keep up the good work. My mother died 20 years ago from Alzheimer’s.” Gerald A.

“Hope this helps a little.” - Nina G.

“Read your article in the Sun-Sentinel and I think it’s great to make donations direct to The Unforgettable Fund.” - Jennie U.

“Read the article in the Sun-Sentinel and was impressed that all donations go directly for research – instead of the frills – labels, cards, note pads. Sorry it can’t be more.” - Susan K.

“I learned that as a blood relative to an Alzheimer’s patient, I stand a 40% chance of ending up with Alzheimer’s myself.” - Ken R.

“My best wishes for your continued efforts in a revolutionary idea!” - Leah J.

“After reading the article by Sally Apgar, and having had personal experience with an Alzheimer’s patient, I am happy to contribute to a fund such as this.” - Irving W.

“I applaud you for your efforts. I read the Sun-Sentinel newspaper article with many tears, as I had a very similar and terribly sad situation with my father. I wish I could send more, but I wish you much good luck in your endeavors.” - Lorell R.

“How refreshing to read in Sun-Sentinel Nov. 27, ‘07, of a way to help fight Alzheimer’s without a “middle man” and a deluge of unwanted address labels and other “free” gifts. I’m enclosing a small donation. I can’t do much, but I can do SOMETHING. Thanks and God bless you all.” - Isabelle E.

“I am enclosing my check to help you in your fight against Alzheimer’s, which unfortunately, at 87 years old, my husband is a victim. Now, for the remainder of his years, robbed of his past. Seems so unfair, but who says life is fair!” - Phyllis L.

“My father also died of Alzheimer’s so I share your pain. I have been giving to the Alzheimer’s Association but like the idea of 100% going directly to research. Keep up the good work.” - Kathleen W.

“Wishing you loads of good luck.” - Shirley G.

“Would like to help in this research. Please accept this check.” - Dorothy A.

“A small donation for a very good cause.” - Elinor A.

“Looking forward to quick results.” - Helene N.

“I read the article in the Sun-Sentinel and am so pleased to find a place for my donation that goes directly to Alzheimer’s research. I hope your work will be fruitful and hasten to make this disease history.” - Rosalie H.

“I’m happy to donate to an Alzheimer’s fund where the money goes to the fund itself and not for “administrative costs”. - Herbert S.

“What a lovely idea you had to remember your father by establishing this fund.” Mary Lou B.

I read and re-read these letters and hear them as a prayer, giving hope wings.

The Power to Remember

2007-12-24T09:44:00.000-05:00

I was sitting outside last night. I'm in Florida, so the weather was beautiful, the sky clear, and a giant full moon lit the night. I started thinking about all that's happened the past year, the shifts in lives of so many people I love. I can walk through the days that passed as if they were happening today, I can recall smells and temperature, I can remember the sky, the conversations, the feelings, the food, the clothing, everything. I can return, revisit, remember. I can go back and forth, from then to now, taking what I want, leaving what I don't. Memory is power.

It seems I have two tools in life - one sketches an image of the future, creating what I imagine things might be. The other acts as an eraser, rubbing off what didn't transpire. One is promise, the other reality. A wise man once told me there is a difference between the two, that the scars of experience remind us which is which.

Malcolm has moved to Mayo Jacksonville, and is doing great things in the Alzheimer's lab there. Claes continues his work at Scripps Florida, making tremendous strides as well. The two of them stand as examples for me. I am not a scientist, far from it, but I watch their dedication, their determination, and their unstoppable quest to cure a disease that killed my father and millions of others. I remain dedicated and determined to help them in any way I can.

They want to do such a simple thing - allow each of us to maintain ownership of the incredible power to recall our own past, to keep the reality of one's life where it belongs, in the memory of who we are, what we are, when we are, where we are, and why we are. They fight for preservation of our personal history, the uniqueness of our lives, our individual meaning.

They think they're curing a disease, I think they're saving the world.

Fathers Passing

2007-11-26T22:38:00.000-05:00

I have this really close friend, like a sister. I've never met her, never talked to her, and yet I know her and she knows me on a very deep level. We have walked the same path, hand in hand with our fathers. At the time my father and I were on this journey, I didn't know her, I was ahead of her by a few years. When I looked back, I heard this young woman speaking so honestly about the rocky terrain she was traveling, describing it so well, that it made me want to yell, "I've BEEN there, LOOK OUT, oh NO oh No oh No STOPPPP. GO BACKK. TURN AROUND."

But as anyone who's been down this road knows, there's no turning back. It's always forward, into the dark, we stumble along gripping our father's hand.

By the time we let go, we are holding onto a shadow. We are hand in hand with a body, a bit of a soul, and a fragment of memory. We look and can't recognize the man who taught us to ride bikes, count money, operate a car. The man who gave us away to our husbands. In our hand we hold the past, memory passes through our fingers, winding its way to our hearts.

There are over 5 million voices now. It breaks my heart to hear the familiar sound as one passes.

Moving up

2007-11-14T20:36:00.000-05:00

Greetings, fellow TUF bloggers. I have good news and bad news:

The good news: my lab has moved to the Mayo Clinic in Jacksonville, Florida!

The bad news: hmmm…well, I guess there is no bad news, after all!

For those of you who may be unfamiliar with the place, the Mayo Clinic, Jacksonville (MCJ) is unquestionably one of THE top centers for Alzheimer’s research in the country (make that the planet!), home to a long list of preeminent Alzheimer’s scientists such as Steve Younkin, Todd Golde and Dennis Dickson, to name just a few. Moreover, MCJ served as a fertile launching pad for the careers of numerous others Alzheimer’s luminaries such as John Hardy, Mike Hutton and others.

So, what's the secret ingredient that led to all this success? It was the Mayo’s sage decision to build a research group in Jacksonville that focuses exclusively on Alzheimer’s disease and other neurodegenerative disorders. This allowed the development of a critical mass that most other institutions lack, which fosters collaboration, makes maximum use of shared resources, and lowers the threshold for significant breakthroughs. I am grateful beyond expression to be associated with such an esteemed group of scientists.

There are more specific reasons for my move, as well, relating to my lab's interest in beta-amyloid degradation. Chris and Elizabeth Eckman are among the earliest pioneers in the broader area of beta-amyloid degradation. Moreover, Steve Younkin and his colleages were among the first to identify the link between Alzheimer’s disease and variations in insulin-degrading enzyme (my favorite beta-amyloid-degrading enzyme and yours). I can only hope that my arrival will make the critical mass more, well, critical!

I have actively collaborated with Mayo scientists for almost a decade, but I’m almost embarrassed to say that, until visiting earlier this year, I didn’t realize what a great thing they have going here. Instead of hiring and training undergraduates to perform the chemical studies I’m involved in, I now have access to a chemistry core (run be real chemists)! Instead of hiring and training technicians to stain the brains of the Alzheimer’s mouse models I work with, I can collaborate with the world’s experts! Instead of shipping my samples to the Mayo to measure beta-amyloid levels, as I have done for years, I can simply drop them off down the hall, or run the samples myself! I’m like a kid in a toy store!!

I hope the reader will stay tuned for some exciting developments to come. Moving twice in two years has surely slowed things down some, but I have tons of data I’m currently writing up, and I know my tenure at MCJ will help me make up for lost ground.

Get your subscriptions for Nature and Science before it’s too late!

--Malcolm Leissring, Ph.D.

Breathing in the present, breathing out the past.

2007-10-26T18:33:00.000-04:00

I've been spending time at my mother's house lately. This is the home she shared with my father for the past 30 years. I'm surprised to find it full of old memories of the past for me, like when she and my father put up my husband and I, along with our new born son, Macklin, for an unspecified period of time. Allan was just starting work as a chef, we were new to Florida, and they opened their arms to us - and a garage full of furniture and boxes as well. They didn't know how long we'd be staying or when we'd be leaving and they didn't care. I'm not sure if I would be as generous with such an open-ended plan presented by my grown children...

I can remember so many different events that took place over the years in this house. It's not all just Alzheimer's disease. It's the good times, the bad times, the real times, that form this kind of protective barrier around me. This is where the heart of our family can be found - in the simplest things. There are gestures of kindness from my mother, the photo of my father with the first airplane he flew, pictures of my brothers and sisters all over the place. They call my mother on a daily basis, if it's not Rick one day, it's Barbara, or Chris, or Peter, or Mike. Jackie, my sister, comes flying through either on skates or her bike or her own two feet. A constant river of all that makes this family what it is - vibrant, connected, alive - swirling around my mother, the center of gravity for us all.

I write a lot about the horror of my father's Alzheimer's disease, and would like to take a deep breath and tell you that there is life after it passes. It's really hard to make it through, together, without pulling apart. I often lost sight of the fact that one day, it would all be part of the past. It would be over. Alzheimer's would be gone.

Another deep breath, love remains. The wreckage is swept up, carted away, by the daily tasks of living life, but it's love that restores our faith, allows us to let go, to release the pain of the past, taking away it's power to hurt us in the present. Orbits are put back in place, our planets resume their rotations, and gravity, created by the heart of my mother, pulls us together.

2007-10-12T23:43:00.000-04:00

A friend and fellow Alzheimer's blogger has asked the following for her father:

"If you want to send healing energy, love, light, whatever, please send it for his pain-free and speedy passage to the other side."

I believe the universe will know exactly where to deliver your prayers - in case you're wondering how they'd ever find her dad.

Don't forget without a fight.

2007-10-02T14:25:00.000-04:00

Understanding the threat Alzheimer's disease poses to its population, the Florida Legislature committed $150 million, $15 million a year for ten years, to build the strongest Alzheimer's fighting machine in the nation. The Byrd Institute was built to serve as the hub of a wheel, its spokes extending to all Alzheimer's researchers in the state. In little more than a few years, the Byrd succeeded in getting their designation as an Alzheimer's Disease Research Center (ADRC). This is an incredible accomplishment, considering there are only 32 of these places in the country. Considering Florida's population, we could use about a dozen more...

Anyway, the Byrd just had its official opening last month - memory clinic, floor after floor of labs, data centers, really incredible. Imagine my shock to learn their budget is on the chopping block! What! We're cutting Alzheimer's research in Florida? All I can think is that the Legislature must not understand how protective Alzheimer's families are of this research. It's our only hope! When you've lived through the horror of this disease as my family has - and if you're reading this blog your family probably has, too - silently watching research take hits like this is not an option for me. I hope it isn't for you either. Please share this video with any one you think might make a difference.

Don't forget without a fight!

Start Fighting by Writing, Florida.

2007-09-25T13:04:00.000-04:00

If you are in your 40's or older, and your parents are in their 80's, there is a 50% chance your mother or father will have Alzheimer's disease. Many get the disease younger, and some even get it in their 60's and 70's. But the majority will succumb some time in their 80’s. Because there is no prevention, every single one of our aging parents are at tremendous risk.

Caring for a loved one with Alzheimer’s is overwhelming. Emotionally, how strong will you be when your mother can't remember you're her child? Physically, how strong will you be when your father raises his fist to strike you believing you to be an intruder? Financially, how strong will you be when the bills for their care start to arrive?

Take it from one who's been there - we are NOT prepared to deal with this disease. In my eleven years of caring for my father, I never met a person who said, "Alzheimer's disease? Piece of cake." Instead, it's the telling of horror stories few are willing to talk about publicly. Or the sharing of sacrifices made to keep our loved ones in their own homes. Or the dilemma of post traumatic stress that swamps surviving spouses. For our parents' sake, for our sake, and that of our children, we can’t forget without a fight.

And I have a fight with you, Florida legislature. Why in the world would you allocate $15 million dollars a year to Alzheimer’s research, build the Byrd Center, the largest free-standing Alzheimer’s research center in the nation, fill its labs with leading scientists, set up state-wide collaborations with other Alzheimer’s labs, and then yank $10 million away from it? I understand the need to care for our elderly through outreach programs. Trust me, I understand tightening the belt. But what you’re doing is strangling the only hope there is for defeating Alzheimer’s disease – scientific research. Let my family’s experience stand as a warning – our current population of 80-year-olds are the first wave of an epidemic of Alzheimer’s that will crash into every living room throughout our state if we don’t do everything we can to stop it. Research can and will stop it, without that hope we are in for a nightmare. Heed the warning, listen to your constituents, and protect this research. As the only fighting chance we have, honor your elders and treat this research with the respect it deserves. Get your hands off it.

Be alarmed, voting citizens of Florida. For this kind of political axing to occur, your representative doesn’t understand this disease, or how its playing out in our homes across the state. We can teach them. Please share your story here - patty@theunforgettablefund.com - and I will see to it that every single one of your letters gets to the Governor of Florida. Tell everyone you know, everyone with an aging loved one in Florida, to start fighting by writing.

Please include your contact information. And send this request to as many people as you can.

Start writing, it’s time these stories got told.

Patty McNally Doherty
patty@theunforgettablefund.com

Don't Forget Without a Fight

2007-09-14T10:31:00.000-04:00

Finally, after all these years, I understand what it is that made my father's Alzheimer's disease so bad for me. I'd never, ever seen my father beaten by anything. He was a kid who fought his way out of inner city poverty, he was a WWII fighter pilot and he fought for what he believed in.

People with Alzheimer's disease deserve a fighting chance.

Other diseases, when you receive the diagnosis, you are given a way to fight. Chemo, surgery, medication, life-style changes. And you have hope that you might win. When you receive the diagnosis of Alzheimer's, your doctor has nothing in his bag of tricks for you. Nothing. You are cut loose and on your own. There is NOTHING you can do about it. There are no medical miracles.

A blog I have followed for years is exploding right now. This woman's father has been tied to a bed in an ER for the past 4 days. He is much like my dad was - unable to comprehend what was happening, unable to protect himself. She is a raw, powerful writer. Blue collar and not privileged. If you want a window into the madness that's coming, I urge you to follow this blog. It's horrifying and it's happening right now in Connecticut - and in millions of homes across the nation.

http://alzheimersdad.blogspot.com

We are left to our own devices, to come up with our own course of action. We are expected to handle the victim, their actions, and all the ensuing insanity. With a diagnosis of Alzheimer's, we are equals - money and privilege can't buy a way out. There are no experts who can turn it around for you. Alzheimer's is a non-discriminatory one way ticket to hell.

If you don't think this is something you need to worry about, think again. Why do you eat right, and go to the gym, and stay healthy? So you can live longer? You may want to rethink that strategy until this disease is taken seriously enough to warrant adequate funding for a cure. That IS something money can buy.

If this disease continues unchecked, it will be tough in every state in the nation, but it will swamp Florida. So the question is, why is the state of Florida acting like none of this is happening? Who's not listening?

Patty

FROM THE ROOFTOPS (and TV antennas!)

2007-07-25T00:22:00.000-04:00

It’s kind of amazing, the generosity to be found in Palm Beach County. Today, Anita Mitchell, host of of WHDT TV’s “Conversations with Anita” interviewed me about The Unforgettable Fund and our effort to fund Alzheimer’s research. For half an hour, we discussed my family’s experience, our eleven years of trying to cope with such a devastating disease, and even had the opportunity to show the 5-minute video of my father’s life, narrated by my mother.

It didn’t end there. The owner of WHDT then gave Anita an additional hour - a full hour! - to interview Dr. Malcolm Leissring and Dr. Claes Wahlestedt, the Alzheimer’s researchers at Scripps Florida. So for a full 90 minutes, the topic was Alzheimer’s. The science and funding issues were covered by our two scientists and the message was delivered - without help from the good people of our community the science is not going to move quickly enough to come up with the answers we’re going to need for effective therapies and treatment in our lifetime. If we want it, we need to propel it. And after what my family went through, and to what so many of you can attest, enough of this disease already! This is a serious topic, hard to put enough emphasis on the need for solutions, and the fact we have a definite clock ticking.

With the help of the media, the message will be heard. Thank you to WHDT - Channel 17, to Anita Mitchell for hosting this show and to all of you who saw it and responded. I’ll try to put clips up next week.

We can DO this, right? We have to do this. Right!

FROM THE ROOFTOPS

2007-07-12T10:03:00.000-04:00

This article was published on The Palm Beach Post "What Gives" philanthropy blog by Susan Miller on Sunday, July 8. She is a journalist who writes about the world of non-profits in Palm Beach County. Please add your comments to her article, if you'd like.

(Also, on July 23 and 24, Anita Mitchell of "Conversations with Anita" will be hosting The Unforgettable Fund on her morning show. If you live in WPB, you can catch the show on Channel 17 at 9:30 a.m. Wahoooo!)

Here's Susan Miller's article:

An unforgettable advocate
By Susan R. Miller | Sunday, July 8, 2007

Many nonprofit organizations are started by people who are touched in some way by an event in their lives.

Such was the case of Patty Doherty, a Palm Beach Gardens graphic designer whose father was diagnosed with Alzheimer’s Disease in 1994. He died 11 years later and the seeds of her advocacy were born.

She rallied her big, Irish family and their friends and within four months started The Unforgettable Fund, an Internet-based, not-for-profit organization.

What makes the fund unique is that proceeds go directly to scientists at Scripps Florida who are trying to unravel the mystery of the disease and find a cure.

It’s been a year since Patty got The Unforgettable Fund off the ground and in that time she’s raised $21,000.

While it may not sound like a lot, she’s done it without spending a penny of donors’ money. All of her work, and the work of others, are donated.

Every dollar raised goes to Alzheimer’s Research at Scripps Florida.

Money is raised by word-of-mouth. She started an e-mail campaign called “The Fighting 22” in which family members each asked 22 others to donate and to ask others to do the same.

Her board includes Dr. Malcolm Lessring, a Harvard Medical School-trained scientist who runs his own lab at Scripps Florida. Their relationship has become symbiotic. For Leissring, it has meant a new money source at a time when finding funding for medical research is an uphill struggle.

Patty recently e-mailed me and sent me a 20-page document she’s had to fill out for the IRS as she attempts to get nonprofit status.

Unlike so many nonprofits, hers’ spends nothing - not on marketing, not on office space, not on salaries, not on fundraising. As Patty told the IRS in her responses to their questions: “Spending $80,000 to raise $100,000 is not the method we employ.”

As Patty plans for the future, she’s got some interesting fundraising ideas such as running profiles on her website of those who have donated and creating web-based events such as a virtual garden where digital flowers can be purchased for a donation.

At a time when reliance on government funding of nonprofits is endangered and grants for medical research are being cut, Patty has some interesting concepts that others in the nonprofit world might look to.

Comments

By Mona Johnson, The Tangled Neuron
July 9, 2007 8:00 AM
If all of us with family members suffering with Alzheimer’s and other dementias turned our grief and frustration into action the way Patty has, we’d be much closer to a cure. Involving people with dementia and their families more directly in research and education will result in better prevention, treatment and care at a lower cost.

By Kimberly Mitchell
July 9, 2007 8:06 AM
First, thank you to Susan Miller for sharing this story of a growing problem and an amazing woman, Patty Doherty. I am a friend and supporter of her efforts and will continue to do whatever she asks me to do to help.

The helplessness families struggle through with this horrific disease, Alzheimer’s, is something everyone in our community must take note of and do something about. Yes, we have lots of causes to involve ourselves in. Yes, we have people who ask for support for those causes. But to me, Patty has laid out a footprint, with substantial, next-door researchers, we could all wrap our hearts and wallets around.

Although it was a rough start getting them here, I am so proud to live in a community where Scripps Research decided to add to their mission for things like Alzheimer’s research.

Bravo, Patty, for connecting that personal dot.

By Jackie Seymour
July 9, 2007 10:36 AM
Thank you so much for posting Patty’s story. She truly is an amazing woman with an incredible passion for helping the helpless.

AD took a huge chunk out of our families heart, time and resources. We did our best everyday to bring comfort to my father by attending to his daily needs, but in the background, always the thought of hopelessness was there because there is no cure. He was only getting worse, every day, week after week, year after year.

ALthough the disease felt hopeless, our love and efforts to make things better gave us hope. We even found many hours of laughter at our ridiculous ideas to make sense of all the madness that was happening.

I believe that in the future more and more families will be affected and by then, their time will be too late, as was ours.

Today is the day we can do something about it and we have the resources and the strength right here in Palm Beach County with Scripps. So now, we just need others to help us, and in the long run really help themselves and there own families.

This disease is not going away and it feels like it is only getting bigger.

There is only one woman in the world like Patty Doherty, but we can be little Patties and all make a difference by giving what we can.

We get in small checks, written by shaky, frail hands of old women who are the primary caregivers of their husbands who don’t even know them anymore.

Each day we have 24 hours to make a difference for our future. Be a Patty!

By Barbara Reuther
July 9, 2007 11:19 AM
Thanks for telling this story. More people need to hear it. People need to know how important it is to participate - to make a difference - to help change the course of this disease.

By Paul
July 9, 2007 12:39 PM
What a great inspiration Patty is for all of us. Thank you PBPost and Susan Miller for taking the time to highlight someone who is making such an amazing difference! I would like to give to the Unforgettable Fund. Where do I send my check and whom do I make it payable to? Keep up the great work, Patty.

By Susan
July 9, 2007 12:43 PM
Click on the blue link on this page that says “Unforgettable Fund” and it will take you directly to Patty’s web site.

By Larry Fisher
July 11, 2007 8:46 AM
Alzheimers is a cruel terrible disease that takes as heavy a toll on the survivors as on the victim. Patty and her family are doing a great job of educating folks and directly fighting the disease. Makes you wonder why organizations like the United Way and others have expenses in the millions. Maybe more “non-profits” need to follow Patty’s example of contributing 100% of their contributions to the actual work of the charity! Thanks for giving the Unforgettable Fund such positive coverage.

FROM THE HEART

2007-07-07T13:51:00.000-04:00

While working in the garden, I was wondering what an individual memory is worth. If someone were to ask me to choose a memory I'd be willing to lose, my first response would be to get rid of the bad ones. The time I fought with my best friend in second grade. The time I got lost in the woods. Labor and delivery without an epidural? Definitely. I'm sure I could find dozens of memorable events with which I'd be happy to part.

But upon a more serious examination of what memory loss entails, it's impossible to untangle one memory from a cavalcade of others. A memory doesn't stand in isolation, like a cut flower in a vase, rather its roots dig deep into the soil of our being. We neither pick nor choose the seeds, but tend this large random garden throughout our lives. A row of grandchildren here, a patch of pets there, a greenhouse full of favorites, a shed full of disappointment, a tool room full of works in progress. The gardens thrive on our unique, particular styles. Memories are what they are, sometimes easy to locate and sometimes so elusive, the more we hunt for them, the further behind a shovel they hide.

Alzheimer's disease strolls into this garden, neither gate nor fence can stop it. Our deep, rich memories are ripped up by their roots, shaken with powerful teeth from the soil of our past, and left to die.

Will I lose the memory of my second grade fight? If I do, I lose the lesson I attached to it - never let the sun set on a quarrel. Will my wandering alone in the winter woods for hours be lost to Alzheimer's? If it is, I'll lose my love of maps as well. Will I forget a 52-hour labor to deliver my first child? If I do, my child, now a grown man, will be lost as well. All are connected in a root system so complex and delicate it challenges the most brilliant among us to unravel its mystery.

I don't know why we remember things the way we do, I just know I want the freedom to wander this terrain, in full bloom, for as long as I draw breath.

Do we grow old to stare at brittle vines, parched earth, the empty rows where the grandchildren were playing just a minute ago or do we fight for our memory, the who of what we are? And if we do fight, what is an individual memory worth? Pick your best or pick your worst, think about the value it has in your life, what you'd give to keep it, and donate that to The Unforgettable Fund for Alzheimer's research. Here's how.

Patty

A father, a dog and death

2007-05-17T15:33:00.000-04:00

There is a graveyard in West Palm that has an intriguing inscription above it. It states "Something so universal as death must be a blessing." Why we don't take more comfort in death is a question, no?

So, for a dreary, rainy, cold Florida day, if you've got time to "kill" here you go:

Years ago, right around the time my father was showing the first signs of Alzheimer's, we went to the pound and picked a most pathetic looking pup, puny with botched coloring. I can still hear my two young sons swearing to walk him and feed him.

My husband and I became the "responsible parties". We named him Truman. He grew at an alarming rate. My vet would laugh every time we brought him in for his check ups. Twenty pounds, then 40, then 60 - finally leveling off at just over 100.

At this point, I should mention the tiny little home we live in - no place to run, no place for exuberance. We rearranged the furniture to make room for his bed, adjusted to longggg, frequent walks to keep him satisfied, and invested in the pet food industry.

Truman became the love of the neighborhood. Small children would run up to embrace this monster, parents would run equally fast to scoop up their trusting youngster. Visitors hesitated at the door, unable to tell his "Come on in bark" from his "I will devour you" bark. What strangers didn't realize, or want to stick around to find out, is that the worse thing this dog would have done to an intruder was lick them to death. He didn't know how to bite. Babies would crawl to his food dish, stick their fingers in his dinner, and he would just sigh, lie down til they were through. He befriended any stray animal, from possum to peacock, that wandered onto our patio - surrendering to his delight in anything/anyone new. He was a good hearted animal. A dog's dog.

At the end of my father's life, I spent each evening sitting beside his bed in the nursing home, holding his hand. Suffice it to say, without a family member present, his end of life care would have been atrocious. That's all I want to say about that for now. My shift was from midnight til seven in the morning, at which time my older sister would come in to take over. I would go home exhausted, the hard plastic chair uncomfortable, the constant ticking and hissing of the oxygen machine impossible to muffle. I spent hours sketching him, trying to memorize every inch of his face. I would hold his hand, stroking it, just being with him.

I came home one morning, and collapsed on the couch. Truman lay at the foot of the stairs, his usual lounging area. He just looked at me, didn't come over like he normally would. I looked at him. I called him to me, he tried to get up but collapsed. I went to his side, sat beside him, held his paw in my hand and looked him in the eye. Was he dying, too?!!! My dog?! Impossible! I grabbed my cell and called the vet. My younger sister and I rolled him onto a sheet and lugged him out to her car. I climbed in beside him, holding his big, huge head in my lap while she drove like a bat out of hell. I cradled my dog, watching his chest rise and fall slower and slower. He didn't cry, he didn't whimper, he just looked right at me and I knew he was dying. I held his paw. I told him, if he was going to die, to have fun wherever he was going. To run and play and have a great time, that we would be fine. That we loved him so much and he had been so good to us. That he was a great dog, did everything a great dog does. His chest rose and fell, his breathing stopped, he lay still, and Truman the dog was gone.

It nearly killed me.

But the really strange part of this tale and why I mention it in such detail is that eight hours later my father died, too.

I know, for me anyway, there are no answers to be found in the odd, random connections in life, but I can't tell you how much comfort I find in imaging the two of them together, walking beside each other to wherever it is we go. Truman wagging his tale, my father whistling for him to follow.

FROM THE LAB-March 2007

2007-04-02T07:50:00.000-04:00

by Dr. Malcolm Leissring

To regular readers of From The Lab, please accept my apologies for not updating until now. I have been busy submitting 3 grants proposals that consumed all my time. Funding levels are at historic lows, so please consider donating.

This is the latest in a series of posts that strive to use ordinary language to describe the Alzheimer's research going on in laboratories at Scripps Florida, as generously supported by donations to The Unforgettable Fund. Readers who are new to this series are encouraged to read prior From The Lab posts for relevant background.

In the last several posts, we described a very exciting advance in the Alzheimer's field. As reported in the journal Nature last October, a team led by Dr. Wei-Jen Tang at the University of Chicago solved the 3-dimensional structure of insulin-degrading enzyme (IDE), an enzyme that can rapidly destroy beta-amyloid, a toxic protein fragment that accumulates in the plaques that litter the brains of Alzheimer's disease patients. This information is useful for a number of reasons, but is especially exciting from the point of view of designing new drugs that alter the activity of IDE. Amazingly, Dr. Tang's team showed how IDE can be activated by small changes that could be mimicked by drugs.

This time, I want to focus in on a special part of IDE, known as the “active site.” This is the business end of the molecule, the bit that is responsible for cutting beta-amyloid into pieces. You might think of it as the "teeth” of the enzyme.

Recall that IDE is a member of a special class of enzymes known as “proteases”, that cut proteins into smaller pieces. Proteins are made up of multiple amino acids linked together in a chain. For this reason, proteins or shorter fragments of proteins like beta-amyloid, are sometimes called “polypeptides.” The chemical bond that joins adjacent amino acids, naturally enough, is called a peptide bond. For simplicity, the figures below show just two amino acids linked together, but beta-amyloid has from 37 to 43 amino acids, and some proteins can have thousands of amino acids.

So how does IDE cut beta-amyloid or other polypeptides into pieces? It does this by catalyzing a special type of chemical reaction known as “hydrolysis.” The term “hydro” means water, and the term “lysis” means cutting. And that is literally what occurs in the active site of a protease-a water molecule is used to separate a protein into two smaller fragments. The reaction is illustrated in the following animation. (Please click the image to view animation.)

It turns out that there are a couple of different classes of proteases, which feature different kinds of active sites. IDE is an example of a “metalloprotease,” because there is a metal atom inside the active site that helps achieve the hydrolysis reaction. For most metalloproteases, the metal is zinc.

I'm going to conclude this blog entry by showing you a little movie of IDE's active site that AJ Brockman and I put together. The brown sphere is the zinc atom, and you can see some dotted lines that show where it interacts with different amino acids inside IDE. To give you some perspective, the movie shows about 2% of all the amino acids in IDE, and is magnified about one billion times. (Please click the image to view animation.)

GUEST HOST Mona Johnson

2007-03-27T17:44:00.000-04:00

Last November, I went to a forum on health research sponsored by
Research!America. Elias Zerhouni, Director of the U.S. National
Institutes of Health (NIH), gave the keynote address. You can see a
presentation similar to the one he gave at
http://grants1.nih.gov/grants/award/NIH_at_the_Crossroads.ppt.

The basic points I got from his presentation were:

• U.S. government funding available for NIH and biomedical
research is stagnant or decreasing
• Given the current budget constraints, it’s unrealistic to think
government can fund in-depth research into multiple diseases, including
Alzheimer’s
• The approach that NIH will take is to shift from focusing on
research related to specific diseases to emphasizing research on
fundamental disease mechanisms (inflammation, protein aggregation,
apoptosis, immune response, signaling) that may be common to multiple
diseases.

It seems logical that this means less funding for Alzheimer’s and
dementia research.

Last month, the Cleveland Plain Dealer published a piece about cutbacks
at the University Memory and Aging Center because a government grant
wasn’t renewed. I don’t know the whole story behind these cuts, but I
suspect we’ll see more of these cuts in the next few years.

If we want basic research specific to Alzheimer’s and dementia to
continue, we’ll need to fund much of it through private efforts like The
Unforgettable Fund. Thanks to Patty and her family for pioneering these
efforts.

Chilling Documents That Shake And Stir

2007-03-22T17:16:00.000-04:00

I have been in Cambridge for the past month and recently came across three important documents I want to share with you. This is scary stuff, so I’ve included some instructions.

First, grab a cup of coffee and read this:
hms.harvard.edu/public/news/nih_funding.pdf

Next, if you want to know how this is playing out in the labs, have a second cup and read this:
http://www.palmbeachpost.com/business/content/business/epaper/2007/03/19/0319scripps.html

And finally, if you want to know how this will affect your future, and that of your children, forget the coffee and pour yourself a stiff one to read this:
http://www.consumeraffairs.com/news04/2007/03/alzheimers_cases.html

As an advocate for Alzheimer’s research, I realize The Unforgettable Fund is not even a drop in the bucket for what’s needed to run a lab but it’s SOMETHING - over $21,000 is a lot of money for one small website to generate. But it’s nothing compared to what’s needed to solve the complex puzzle of Alzheimer’s disease. Come on - do we exercise and eat right and watch our cholesterol and avoid fatty foods and get a good education and wear our seatbelts and pay our taxes so we can reach old age without a single memory of having done so?

Our brightest minds battling our most horrific diseases have become the charity cases of the 21st century. What! Funding science is not charity, it’s the duty and obligation of our nation’s government to provide for the health of its people. But what if they refuse? What if they just say no? What if they aren’t listening? It’s up to us to make them listen.

Why isn’t it common knowledge that our Alzheimer’s labs are being forced to fire their employees? Why isn’t it common knowledge that our cancer labs are being forced to let people go? You would think our government would be gearing these scientists to fight the battle for the health of the nation.You would be wrong.

I don’t know about you, but I find the funding situation at the NIH outrageous and appalling and I plan to do something about it. If you want to know what I plan to do, please send me an email with contact information, you may want to join me. All suggestions are welcome here and I'll be more than happy to post the best ideas of the bunch. For instance, how about a National Take Your Parent To Work Day. How quickly corporate America would get it if our demented parents came to spend the day...

I refuse to believe this funding situation can’t be changed. Please help. Please think. Please share.

FROM THE VAULT.8- Mar. 2007

2007-03-18T13:29:00.000-04:00

Hello Everybody,

Here is the donation update for the past two months.

In January 2007, we received:
Online donations= $470.41
Mailed donations= $ 50.00
$520.41 = January total

In February 2007, we received:
Online donations= $ 38.23
Mailed donations= $1,025.00
$1,063.23 = Febuary total

Here is a financial summary of The Unforgettable Fund which began in May 2006:

May - June 2006= $10,534.62
June -July 2006= $ 71.58
July - August 2006= $ 553.32
August - September 2006= $ 115.00
Sept - October 2006= $ 200.00
October [second half]= $ 425.63
November 2006= $ 853.94
December 2006= $ 7,376.50
January 2007= $520.41
February 2007= 1,063.23

Total contribution = $21,714.23

Thank you to everybody.

Allan Doherty
FROM THE VAULT

GUEST HOST Bert Piedmont

2007-03-13T15:35:00.000-04:00

How Alzheimer’s Hurts
Alzheimer’s hurts the person who has it, and all those who come into contact with him (or her). My father was diagnosed in 2004 at age 63. The only experience I have is my own (which you can read about at http://alzheimersdad.blogspot.com), and here’s what I’ve seen/learned/experienced:

Social Isolation
As my father gets worse, we take him out less and less. Since my mother has 99% of his care, that means my mom goes out less and less. I try to take him with me once in a while to give my mom a break, but it’s hard to pretend he’s “helping” anymore. He’s a hindrance, and that’s awful to say. He balks, he gets lost, he gets loud and argumentive. He can’t carry on a conversation, he can’t carry anything (something that weighs five pounds he’ll complain is“heavy”).

Embarrassment
Some of my father’s little foibles are very embarrassing. He is highly flatulent, and he doesn’t rein it in at all. In fact he seems to delight in pretending he hasn’t done anything. The noise and the smell can’t be hidden. Even around people who know he has Alzheimer’s (and who forgive his issues), we’re embarrassed.

Worry
I can’t help but worry that I’ll get Alzheimer’s. Depending on what book or article I read, I have a 50-100% chance of getting it. And my dad’s was on the cusp of Early Onset—we’re sure in hindsight that he started showing symptoms in his 50’s. I’m in my late 30’s, and every time I forget something, I think, “Is this how it starts?”

Despair
It’s sad and horrifying to see a person you care about basically disintegrating before your eyes, to know that all the drugs and treatments in the world can only slow it down, and in effect prolong the agony.

Ethical considerations
Beyond a simple DNR order, there are other decisions to be made, and none of them pretty. My father had a heart attack last summer, and he had stents put in as a result. (My mother wanted to spare him the continued chest pains, not necessarily prolong his life.) The hospital ordeal was so awful for him (he was restrained and drugged overnight) that we’ve decided to never put him in the hospital again for anything.

Financial difficulties
My parents are typical middle-class people. They have a small house, which is paid off, and originally they had two vehicles, also paid off. Nearing retirement age, they had some savings as a cushion. My dad retired as soon as he was able (because of the memory problems, we believe now—he said they used to “get mad” at him for “forgetting things”) and went on Social Security—the grand sum of $1,200 a month. My mom lost her job right after my dad was diagnosed. She is too young to retire and because she has to stay with my dad 24/7 she can’t get a job. His medicines (two kinds of Alzheimer’s medicines, heart and cholesterol medicine, anti-anxiety and anti-depressants) are over $600 a month. Medicare doesn’t pay for 100% of any of them, and by September each year, Medicare pays for none, which means the last few months of the year my mom has to spend 50% of their income on medicine. Because they own the house and have savings, they aren’t eligible for any other government assistance. My mom also has to pay for medical insurance for herself out of that $1,200 a month. When my father finally has to go into a home, the state will take the house, car and whatever is left of their savings to pay for it, as well as my dad’s Social Security. Hopefully by that time my mom will be old enough to retire and get her own check. They can’t afford any kind of respite care or day care. My mom has me or her friend come over and stay with my dad if she needs to go somewhere by herself, but that is very upsetting to him. I have a part-time job so I have the time to do that, but because I have a part time job to have time, I haven’t got the money to help in other ways. It’s a vicious cycle.

All of us in the world of Alzheimer’s wish for a cure. Or a “stop”—find it, stop it where ever it’s at. But in the meantime, would it be too much to ask for help in other ways? The families and loved ones of Alzheimer’s patients need so much more than a bottle of pills. If you know someone in this situation, please reach out. If you are in this situation, and feel like you need help, ask those around you.

-Bert Piedmont

GUEST HOST Gail Rae Hudson

2007-03-06T10:25:00.000-05:00

She's Ain't Heavy, She's My Mother

When I read Patty's introduction of her guest hosts, in a twist of thought I cannot explain I was reminded of something one of my sisters mentioned during her last visit a couple of months ago: That her husband wanted to see Mom "before she dies". I reacted briefly to this, as noted here, writing that I understood but had never experienced this One Last Look phenomenon and could not recall that it was a hallmark of my own born-into-family. We lived mostly out of country. Although my parents saw to it that we visited relatives every three years or so and I'm glad they did, as I would have known nothing of them otherwise, as our Ancient relatives ailed and died our family made no attempts to view The Passing Ones.

As I thought with more depth about this common desire to engineer one last visit with an Ancient One with whom one has lost touch (and, it has to be said, probably won't be able to reestablish touch during that last visit), I realized that when I wrote of my understanding I was doing so out of turn. My attitude is, if you haven't kept up with someone throughout their life, what's the use of rushing to view them on their death bed? No glimmer of understanding in that attitude. Time, I decided to think about why my relatives have come to this. What's keeping them away now, I wondered, while Mom's still alive and kicking?

I began with the present and worked backward. Over the last few years I've become exasperated with the implicit dictate that when family visits we are to adjust to them, their requirements, and their beliefs about the various toxicities with which Mom's and my life together might infect them, while continuing to maintain those qualities with which family members are familiar, in which they take pleasure and which assure they will feel as though they've maintained a meaningful connection with Mom. Funny, though, before the edict to adapt, adapt, adapt wore me (and sometimes Mom) down to the point of not wanting to do this anymore for relatives who were refusing to adapt to us, from the time I decided it was not only necessary but desirable for me to be Mom's full time, full service, always-there companion and caregiver, there has appeared among my relatives an obliquely expressed tension implicit in such observations and questions as:

The infamous, "Take Care of yourself";
The sympathetic, "Don't you miss your past life?"
The meant-to-be-supportively-provocative, "What will you do when Mom dies?"

and the inevitable silent questions, some of which I can imagine with what I consider to be some accuracy:

"If the caregiving sibling doesn't consider her life inviolate, am I wrong in thinking my life is?", and
"Maybe, when one gets to be old, one no longer sees the sense in avoiding burdening their children with their elder care...omigod, what if I start feeling like that? Isn't that selfish? Doesn't that mean that I will become one of those parents who will plague, rather than bless, my children's lives?"

In one way or another, over the years, I've responded to these questions directly to family members and ruminatively through my journals because they are important to me. My answers, though, have never been sufficient for my relatives. In some cases they've been considered irresponsible and insane. The tension has continued.

Trying to identify the root of the tension, I realized that in doing what I'm doing with our mother and insisting on doing it in the most involved and meticulous of ways, far from doing my relatives a favor so that they wouldn't have to worry about Mom, I've betrayed them.

When my maternal grandmother began to dement, her daughters and their families were united in picking up the slack, first by sharing shifts of companionship and maintenance while Grandma remained home in Prescott; then in Scottsdale, where Grandma was moved so the shift taking would be easier; then in my aunt's home, where Grandma was moved when it became obvious that she needed continual watching, mostly by professionals, since everyone else was employed in the world of commerce; finally, in the last half year of her life, in a nursing home when the care she needed was beyond their financial and emotional capacity. During all stages, the family was united. During all stages they agreed that changing Grandma's life so they could continue with their own lives and still have Grandma close was not only the right but the smart thing to do.

That's not what happened in our family. One of us, me, stepped out of line. One of us said, "Okay, I'll change my life to incorporate my mother's. I'll focus on her life as consciously and meticulously as I focus on my own. If changes need to be made, my first priority will be to see what changes I can make in my life to accommodate the changes in hers. Further, instead of thinking of it as a sacrifice and a duty, I'll consider it an adventure, a learning experience, a chance to get to know her as I've never known her, an opportunity to expand my skills, perceptions, mind and heart."

When I did this, despite all my and my sisters' attempts to make my choice appear to be beneficial to all, what I actually did was unwittingly declare that we were no longer united.

This, I think, is most likely the primary reason why, when one member of an extended family assents to give full time, intense companionship and care to one or more of a family's Ancient Ones, families fall apart. There are other reasons, especially when everyone's trying to provide, everyone's trying to split the "burden", everyone's trying to negotiate the difficulty of maintaining some kind of dignified, stable surround for the Ancient One. When one family member disagrees with society, though, and decides to recognize Ancient needs that most of us won't acknowledge because we're afraid our own needs will get lost in the shuffle and we'll lose what lives we think we have and, anyway, it seems "right" that the Ancient should lose what appear to be their dwindling lives to what appear to be the thriving lives of those younger, that disagreement becomes betrayal.

I've witnessed the opposite twice in my mother's family and once in my father's family. When a family decides it's best "for everyone" to put an Ancient One in a nursing home, assisted living facility or surrender her care and companionship to the professionals, the siblings unite in a sense of shared relief, loss, grief and shame: Relief because everyone believes their lives have been spared, well, something horrible, surely; loss because everyone knows (though rarely does anyone acknowledge) that they have set the Ancient One on a journey which will render her a stranger to everyone; grief because, well, that's the way of life, isn't it; shame because of the discomfort of having to negotiate the conflicting messages from our society that we're supposed to be able to handle everything, do it all, despite the odds, except, message two, care for our Ancient Ones, the professionals should be doing that, so, here we all are, not completely sure whether what we've done is "right" or "wrong".

The relief, loss, grief and shame aren't nearly as important, though, as the unity. No one feels as though anyone has endured more or less than their share of the circumstantial and psychological "burdens" of answering the question, "What should we do about Grandma?" There is no subterranean questioning and reworking of family values. No one is standing out in the crowd. Rule by Mob is Rule by Right. We all agree. We're all safe because We're Not the Only Ones.

The person who decides that the societally prescribed treatment of Ancient Ones isn't a treatment with which she can live is the renegade. What she decides and what she does calls into question her relatives' values, society's values. Suddenly, everyone who knows her, relative or not, finds themselves harassed to question their own values, their hearts, their society, their lives. Considering these questions is an enormously uncomfortable task; so uncomfortable that we spend a great deal of our lives trying, often successfully, to avoid them or defending ourselves against them instead of doing the hard work that is involved when we face them down. Thus, the person who decides to break away and face those questions every day in the acute presence of the Ancient One becomes a reminder of all that the rest of us find ourselves unable to face. That's reason enough for dissension in the family ranks, dissension so potent that it is frightening to confront and easy to avoid.

What are the details of the betrayal of the full time family caregiver? She has betrayed her family by listening more closely to the Ancient One; allowing for the Ancient One's changes in perception and decision; embracing the inconvenient, risk and compassion more thoroughly than anyone else in her family. Later, when she's hit her stride, she betrays her family by insisting, more through action than words, that the companionship she's offering, the care she's giving, isn't a career, it's life, and life, to her, is more important than career. She heightens the betrayal when it becomes obvious that she considers that in taking care of the Ancient One she is taking care of herself. The acme of her betrayal comes when she declares, either through action or words, "We've done more than enough adapting to you. Time for you to adapt to us. Refamiliarize yourselves with us. Help us. If you can't, at least stop thanking me. I'm not doing this for you, I'm doing it for our Ancient One and for me. Stop sentimentalizing me as a sacrificial saint."

One way to avoid the dissension is to avoid the situation, which means avoiding the caregiving family member and the Ancient One. This is where the isolation of the caregiver begins. The other avoidance technique is to blame the dis-eases (see Sam Keen's "To A Dancing God" for an explanation of "dis-ease") of Old Age rather than the fears of the family. News Flash: Dementia of any sort doesn't create family dissension. Neither does physical frailty. People create family dissension.

This is a revelation to me. Since I became my mother's final companion, I spent years trying to make it so easy for my sisters to keep up with my mother and me that I almost broke my figurative back. I believed it was all on me. I'm the one who's rebelling, I'm the one who should come up with the solution. Turns out, when family and society are involved, adequate solutions can't be discovered by one person.

It's time for us to pillage and plunder The Land of The Soon to Be Dead out of existence. It's time for us to consider that if one is alive, even if it's a good bet that The One will die tomorrow, she's alive today, changing and, yes, growing. It's time to remember that while we may cure many of the physical conditions now implicit in Old Age, Old Age will always be with us and will remain, in some measure (although it could be less so) mysterious to Us Who Are Not Yet Old. It's time to stop holding an octogenarian or nonagenarian to perceptions and decisions she made in mid-life, such as declaring that she doesn't want to be a "burden" to her children and buying a long term care policy (both of which my mother did and both of which she later repudiated), decisions she made out of the same fear of Old Age to which we are victim but which she has, since, conquered by the inevitable act of becoming old. We don't hold 45 year olds to the decisions and perceptions of their nine year old selves, or their 15, 25 and 35 year old selves. What makes us think that we have the right to do this to The Old? It's time to realize that we consider our full time, in-home family caregivers and companions to Ancient Ones betrayers of an implicit and insidious family trust, a trust that will, eventually, deny us our family and our membership in society if we don't begin questioning it, now.

There are still discoveries to be made about our Ancient Ones as people, as individuals. Relationships with our Ancient Ones remain loose enough to change and develop, even in the grips of dementia. Wanting to be familiar with Our Ancient Ones is the reason we should want contact with them, primarily on their terms, even if those terms have changed since they were in mid-life, as this is the most generous and enlightening way to know anyone. While it is true that a primary parental responsibility is to civilize children, The Old have already been civilized. When we decide that Old Age is a process of devolution and the rest of us must grab The Old One and forcibly maneuver her backward so that we can stand to be around her or easily abandon her to The Land of the Soon to Be Dead, we do her, and ourselves, a great indignity and we marginalize those of us who feel compelled to remain side by side with our Ancient Ones. It does us no good to simply want to view Our Ancient Ones before they die. We need to remain in close, adaptive contact for the health of our Ancient Ones; for the health of our caregivers; for the health of our families; for the health of our society; for our own health. We need to be doing this together, enfolding, rather than fearing, the choices of the family caregiver, the one who's chosen to directly embrace The Ancient One, or we'll all be traveling Ancienthood isolated from our families, our friends and our society. Oops! That's what we're doing now, isn't it?!? Better get cracking, people.

INTRODUCTION:
I am a full time, companion and intense needs caregiver for my Ancient One mother. I assented to do this, in response to her request, after six months of consideration, in December of 1993. Since 1999 I've kept a group of journals detailing our adventure together, the main one housed at The Mom & Me Journals dot Net. Please feel free to contact me, if you wish, at gailraehudson@themomandmejournals.net. To avoid your message being deleted as spam, please insert the following into your subject line: "The Unforgettable Fund".

GUEST HOST Deb Peterson

2007-02-28T09:51:00.001-05:00

It's both an honor and a pleasure to guest host The Unforgettable Fund while Patty is away. My name is Deb Peterson and almost a year has passed since I began my own blog, The Yellow Wallpaper. When I posted my first entry on March 18, 2006, I knew very little about blogs and their potential. My mother had been diagnosed with probable Alzheimer's Disease in January, 2005, and I had been living with her ever since. During that time I'd read whatever I could get my hands on about the disease, but I still wasn't satisfied with what I knew.

From my reading I learned a lot about Alzheimer's stages and trajectories and medications, but I still knew very little about the caregiver's experience. How do you redefine "hope" after the future disappears behind the blunt immediacy of this illness? What do you talk about with the beloved parent whose world has been reduced to a collage of delusions and fears? How do you feel on the morning of the day that you place the care of that parent in a stranger's hands?

My blog began as the proverbial cry in the wilderness, only I discovered that it really wasn't a wilderness out there. Between posts I'd wander the internet, listening for other voices, and before long I heard them. I left a timid comment on Michael Murphy's Smoke & Mirrors blog after reading a beautiful post about his relationship with his late mother, an Alzheimer sufferer. Almost immediately he responded warmly. My next discovery was Gail Rae Hudson's Mom and Me Journals. I couldn't believe my luck--I left a comment and the next thing I knew, Gail and I had a conversation going. I then found Paula Martinac's Dementia Blues--another conversation, another friend. And then Mona, Karma, Bailey, Mike, Patricia--all of us conversing and finding the patterns in our lives as caregivers.

I found The Unforgettable Fund by way of a comment Patty left on Bert Piedmont's Had a Dad blog. Not only has Patty been there for me with generous and supportive words, especially during my mother's most recent difficult transition to assisted living, but she and her family back up their concern with the remarkable work they do on behalf of everyone who finds themselves in the shadow of this unspeakable disease. After caring for their own father through his illness they continue to fight the fight in his memory.

Had I not begun my own blog, I might not have met these wonderful people. I know I am a better caregiver because of their example and support. Although we have found each other because of our distinct as well as similar experiences with dementia, we might easily have become friends under other circumstances. I think of our conversation as one pattern in the texture of the internet, and I believe that our conversation is contributing to a renewed view of the bond between the Alzheimer sufferer and his or her caregiver.

Alzheimer's Disease is not a condition that is suffered only by a portion of our older population. As long as our government turns a blind eye to the problems--financial, logistical and psychological--of caring for its vulnerable members, then we all will suffer from it. I hope to post again soon about my own struggle to take care of my mother, so I'll close now by thanking Patty and her family for the opportunity to share my story. I'm glad to be here.

Guest Hosts

2007-02-20T18:02:00.000-05:00

Over the course of the past eight months, I have had the privilege of reading a number of exceptional blogs that deal with the subject of aging in a most illuminating way. They are, in no particular order:

The Mom and Me Journals
by Gail Rae Hudson

The Yellowed Wallpaper
by Deb

Had a Dad
by Gevera Bert Piedmont

The Tangled Neuron
by Mona Johnson

Since I have been called out of town and won’t have the opportunity to post for the next month, they have graciously agreed to “guest host” The Unforgettable Fund blog in my absence. I hope you enjoy meeting them as much as I have, seeing that there are as many things that make us different as there are that make us the same.

I would be remiss in not mentioning there are dozens if not hundreds of blogs I have visited that do a fantastic job of documenting the experience millions of us are having with our aging parents and loved ones. A few I have grown to admire are:

Fading From Memory

JewBu Quest

Mighty Iris

And with that, wish me well on my trek to the frozen north. I feel the blog couldn't be in better hands. Will be back in the Spring.

Patty McNally Doherty - one of millions

P.S. I would also like to mention Dr. Malcolm Leissring will be posting "From The Lab" as soon as he can take a breather from writing grants. Rumor has it, it will be soon!

FROM THE VAULT.7- Jan. 2007

2007-01-13T01:30:00.000-05:00

Hello Everybody,

Here is a donation update for December 2006.
Direct donations= $2,000.00 (Made directly to Scripps in the name of The Unforgettable Fund.)
Online donations=$4,951.50
Mailed donations=$ 425.00

Total for December=$7,376.50

Here is a summary for 2006. The fund began in May 2006.

May - June 2006= $10,534.62
June -July 2006= $ 71.58
July - August 2006= $ 553.32
August - September 2006= $ 115.00
Sept - October 2006= $ 200.00
October [second half]= $ 425.63
November 2006= $ 853.94
December 2006= $ 7,376.50

Total contribution for 2006 = $20,130.59

A tremendous 'thank you' goes out to everybody who made 2006 a success for The Unforgettable Fund.

Looking forward to 2007,

Allan Doherty
FROM THE VAULT

Ardus the Unforgettable

2006-12-30T19:35:00.000-05:00

I don't think I've ever met a woman as kind and gentle, warm and loving as Ardus Sher. Her passing this month deeply saddened all who knew her. How can we find comfort without her gentle presence in our lives?

Years ago, her late husband Alan gave me sage advice.
"When you don't know what to do, do the next right thing."

With that in mind, in honor of the beautiful, unforgettable Ardus, I offer these pages of memories. Her son Richard and her daughter Carrie bravely delivered two of the most moving tributes at her funeral and with their permisssion, I have posted them at The Unforgettable Fund.

FROM THE HEART.4 - Dec 2006

2006-12-16T13:07:00.000-05:00

Tales from the B-List

There were good days and there were bad days. When one of us was on my father's B-List, it was a bad day.

To get on the A-List, one need do nothing more than walk into the room and say hello to my father. He would smile and laugh a hello, as if he hadn't seen the A-List member in years.

To get on the B-List, one didn't have to do anything more than walk into the room. either. My father would scowl and demand "What the hell are you doing here?"

We came to realize, it didn't matter who WE were, it mattered who HE was at that particular time of day.

To be on the A-List was a gift from above. All went smooth, there was complete cooperation, and caring for my father was a pleasure. Nothing was difficult, everything was a breeze. It was almost laughable to think people complained about caregiving. It was a piece of cake!

To be on the B-List was punishing. Nothing worked, there was argument and challenge, and caring for my father was a nightmare. Everything was questioned, nothing went smoothly. It was tears of frustration, not just sweat, we mopped from our brows. Caregiving was hell.

Between these two extremes, we passed eleven years of our time with my father. Finally understanding the rules of this twisted game - Alzheimer's wins/you lose - we upped our defiance level. We don't like to lose. We devised the A-List/B-List Theory. We turned it into OUR game, and fuck Alzheimer's. To get on the A-List took sheer luck, but to STAY on the A-List required much skill. No arguing, constant reassurance, gentle suggestions, slow, quiet, peaceful hours. But experience taught us, you could fall from a coveted A-List position without warning and all hell would break loose.

You could move off dreaded B-List membership, by gritting your teeth and waiting for it to pass. This wasn't any fun at all. Or, you could try to work the odds and regain A-List positioning. Did I mention we don't like to lose? We read books, we asked people questions, we queried web sites and there was little that actually applied to our particular situation. Years ago, information was even harder to come by than it is today, blogs didn't exist, at least not in our realm, and we wouldn't have had the time or energy to invest in the search anyway. The Alzheimer's "experts" we did contact and who's advice we paid thousands of dollars for were such a joke I'm dedicating a future post just to them...Basically, we were left to our own devices and, oh my goodness, were we ever in strange territory!

The biggest and hardest moment was when we embraced the truth that my father had no memory of who we were, Alzheimer's had swallowed us whole. But as thinking, creative and loving daughters, we were also free then to establish new relationships with our father. I remember convincing him once I was a doctor and licensed to brush his teeth. My sister brilliantly discovered if she would leave the room when she was B-Listed, tie her hair back, put on red lipstick, and re-introduce herself to my father, bingo, she'd be A-Listed. My other sister would humor him by pantomiming things he knew from long ago, her flying like an airplane around the living room comes to mind, my father's eyes glued to her every move, nodding in agreement. A loved, hired caregiver had quite a unique communication system devised of beeps and chirps, like a strange bird, and my father would be entranced, copying the odd language in reply. For awhile, if we burst into a hearty rendition of "Happy Birthday" my father would find himself joining in with much gusto and the day would shift from confrontation to celebration.

We found our skills by accident and clung to them until they failed us and new ones had to be discovered. It was grueling, relentless work and our success can only be credited to the fact we shared the burden with each other. We couldn't have done it alone, at least not in this household.

It was hardest on my mother, as can be expected. She had had the longest relationship with my father and her habits were engrained. She would never, ever deceive him, no matter what, whereas my sister and I, well, hadn't we spent a good deal of our teenage years doing just that? It was easier on us. And we became quite good at it. To get him to move from one room to another might be accomplished by saying we were going for a drive, let's go to the car. He loved car rides. Up he'd pop, ready to go, but the path would really lead to the kitchen for lunch. If we had asked him if he wanted lunch, he would have said no and there would be no talking him into it. But finding himself there with a meal on the table, he'd sit down and eat, never thinking about the car ride. Another thing that helped was to act as surprised as he did. How did this lunch get here?! Who knew you liked ham sandwiches?! Who could have made this?!

What did help my mother, though, was devising the "A-List/B-List" Theory. We were able to help her feel less responsible for having "done something" to trigger his wrath. She was in good company, with her daughters, no matter what list she was on. It was one of our many methods for coping with my father's dementia. Anyone looking into our home would have found all of us, not just my father, completely certifiable. When we loved him, we embraced his world, too. We just didn't have the disease, or the mercy of forgetfulness it confers on those who do. We remember all of it.

What Alzheimer's made of my father was beyond our control, what it would make of us was entirely up to us.

This is not a place any of us want to visit. Those of you who find yourself here, you're not alone, as hard as that is to believe, there are over four million of us. As usual, I ask any of you reading this who are in a position to help, fund the research to end this disease. Visit The Unforgettable Fund, there is no amount too small to make a difference. Help us B-List Alzheimer's.

FROM THE VAULT.6- Dec. 2006

2006-12-08T17:11:00.000-05:00

Hello Everybody,

Here is a donation update for November 2006.
Online donations= $328.94
Mailed donations= $525.00

Total = $853.94

This brings the total contributions to:
$12,754.09

Thank you to the individuals who are making monthly and bi-monthly contributions, as well as everybody else who has participated.

Allan Doherty
FROM THE VAULT

FROM THE LAB.5-Dec 2006

2006-12-04T17:06:00.000-05:00

by Dr. Malcolm Leissring, Scripps Florida

Q: What does IDE look like?
A: Pac-Man…...on a diet

Last time, I reported on two very exciting developments regarding insulin-degrading enzyme (IDE), a protease that destroys beta-amyloid by chopping it into pieces. One of the most important advances was the unveiling of the 3-dimensional structure of IDE. This information is priceless, and useful for a large number of applications, particularly for understanding how the enzyme functions and also for designing drugs.

My job on this blog, together with Susan Shepard, is to convey these scientific advances in a way that non-scientists can understand. If you’re anything like me, then one of the easiest ways to understand new concepts is through pictures. Now that we have the 3-dimensional structure of IDE, I can show you pictures of this most important and exciting protease.

The structures show that IDE consists of two bowl-shaped halves connected by a flexible hinge. These new structures of human IDE, together with the structure of a bacterial relative of IDE, show that the protease can open and close, in a manner not unlike the main character in the familiar video game“Pac-Man." Take a look at this series of pictures to get a feel for what I mean by this:

Now, from these new structures, came a very significant discovery. It turns out that the two halves make extensive contacts with each other when the mouth is shut, and this tends to keep IDE in the closed state. I like to use the analogy of a “latch,” like the magnetic ones on some purses, for example, which is represented by the green bits in the following picture:

Normally, the latch is engaged, meaning the “closed” state predominates:

What does this mean for IDE function? It means that IDE is a bit different from the Pac-Man we all know and love. Because IDE’s mouth is usually closed, it can’t gobble up all the dots (e.g., beta-amyloid molecules) it encounters. To help get this message across, I collaborated with Adam (“AJ”) Brockman, a very talented young graphic designer. The following movie makes the point that IDE can’t normally gobble up all the dots because his mouth is usually closed: (click on image to view animation)

Now, as we discussed last time, the team that uncovered the structure of IDE, led by Wei-Jen Tang, showed how very important this “latch” is to IDE function, and to the potential development of new treatments for Alzheimer’s. They introduced small changes in IDE that disrupted this “latch” mechanism. To signify these changes, we have colored the latch red instead of green in the following picture:

By disrupting the latch, these small changes cause IDE to be more likely to adopt the “open” configuration, like so:

Hopefully you can guess the punchline: disrupting the latch allows IDE to gobble up more dots, just like the original Pac-Man. Here’s another movie of AJ’s that makes this point: (click on image to view animation)

These movies vividly make the point that disruption of IDE’s latch essentially puts a turbo boost on IDE. The above movies depict an increase of 333% (3 out of 10 dots are gobbled up in the first movie, versus 10 out of 10 in the second). In reality, the mutations Dr. Tang’s team made caused an increase of 4000%! To depict just how big of an effect this is, the first movie would have to show just a single dot getting gobbled up (1 out of a total of 40), with the second movie showing all the dots getting gobbled up (40 out of a total of 40).

What does all this have to do with Alzheimer’s disease? Well, the changes that Dr. Tang’s team made to IDE are relatively small, small enough that they should be able to be mimicked by drugs. That is, there is a strong prediction that small molecules can be found that also disrupt IDE’s latch, and also turn on the “turbo boost.” Indeed, my lab has already found some compounds that activate IDE by ~350%, essentially the same amount that the movies show. There’s a lot of work yet to do, and most likely much better compounds will eventually be discovered, but the idea that a drug can be found is a dramatic development, that should give us all a lot of hope.

How my sister changed my world

2006-11-25T12:37:00.000-05:00

If anyone's wondering, the young woman in the video - "Richard McNally: A Life Forgotten" - is my sister, one of our father's many caregivers. I keep coming back to a conversation she and I had. Our father was a very healthy man, no health issues other than a mind riddled with plaques and tangles. He was sitting on the back patio - much of our time was spent on that patio - my sister and I were discussing hiring someone to help us. She was standing beside him, had just finished shaving his face, brushing his teeth, when she noticed his collar was standing up on his shirt. She smoothed it out, patted it down gently, and said, "No one we hire would do that." And that, as simple an action and as insignificant a statement as one could ever make, summed it up perfectly. And it scared the daylights out of me.

Surely a man's collar doesn't determine his quality of care, does it? It does if you know the code.

It isn't the big things that matter, it's the million and one small things. And with Alzheimer's care, it's ALL small things. Nursing homes stand as testament to that fact. There isn't a nurses aide on the planet who will disagree with me - there's not time to see to all the small stuff. And, in my opinion, that's why they crash and burn with the big stuff.

With Alzheimer's in our home, a single caregiver couldn't do it all without a lot of help. Real hands-on, attuned-to-the-unique-situation, let-me-in-the-trenches-with-you, move-over-I'm-coming-in, help. There were just way, way too many small things. And if the small things weren't covered, the big things crept in with alarming speed. Dad is lost, but I'm on deadline with a job! Dad is over at the neighbors, but I have to take the kids to baseball practice! Dad is fighting with the "man in the mirror", but I'm out of town! Dad has a rash, but I don't have a car and the pharmacy doesn't deliver! Dad has a fever, but the doctor won't come to the house! Dad fell down, but he's too heavy to pick up! Dad made Mom cry, but I'm in the middle of dinner! Dad won't get up, but I have to get the laundry done! Dad took the keys, but I am sick in bed! Dad, but! Dad, but! Dad, but!

In our eleven years of co-caring for our father, when it came to what had to be done, we struck the word "but" from our vocabulary.

For me, the most significant task my sister performed was the smoothing of our father's collar. The love of the man wearing the shirt, the determination that patted it down, the awareness that saw it was out of place to begin with, taught me more about Alzheimer's disease and the tremendous care it required than any of the innumerable "experts" we had consulted on the subject. She learned the code and was teaching it to me.

Some of you will recognize my sister's contribution. Everyone else reading that the simple act of smoothing a man's collar changed my world, will think I'm nuts. But that's part of the code.

When my father died, we started The Unforgettable Fund to get funding into the Alzheimer's lab at Scripps Florida. Since May, by word of mouth alone, we've donated almost $13,000, every penny going to research and research only. Our intention is to beat Alzheimer's disease. No buts about it. Please help if you can.

In my mother's words

2006-11-17T14:54:00.000-05:00

There are over 4 million people suffering from Alzheimer's in America. This is one story - my father's.
This short video was donated by Table13 and Jonathan Shepard, a young film maker, in support of The Unforgettable Fund's policy of spending NO MONEY on anything but research. It starts with a perfectly blank screen, and then the story begins...

All donations to The Unforgettable Fund go directly to Alzheimer's research. Please help.

FROM THE HEART.4 - Nov 11

2006-11-11T20:21:00.000-05:00

My father and I would sit on the back patio to get some fresh air, we’d watch the world go by. Cars, people running, walking, pushing strollers. Life was so normal “out there” and so crazy with Alzheimer’s inside our house. My father would wave at someone. They wouldn’t wave back. He’d wave harder. They wouldn’t wave back. He’d get up out of his chair and wave, this time yelling Hey YOU! They’d look at him, get a little frightened and move faster down the sidewalk. He’d head for the edge of the patio, ready to take on the world. It would take all the cajoling I could come up with to calm him down, return him to his seat. The next person would go by, and we’d start the entire process all over again. I figured we’d just have to keep him inside from now on, he was too unmanageable, surrendering still more ground to Alzheimer’s.

One day I went to the house. My mother had made a large sign, with letters made of red tape. It said “PLEASE WAVE”. She would hold it up behind him when he’d spot a passerby, they’d see her sign and wave, he would be happy, and life would be tricked into “normalcy” again. I keep that sign on my bookcase to remind me of how pathetic our resources are to cope with Alzheimer’s yet how creative my mother was in beating it back. Alzheimer’s doesn’t win every round.

She fought for my father’s quality of life for eleven long years. She was strong, she was determined, and she never gave up. He smiled because of her. He waved because of her. And he enjoyed the sunshine of his back porch for years.

He died in January of this year, and we STILL have nothing more capable of stopping Alzheimer’s than a half-empty roll of heartbreakingly red tape. We can do better than that. You can help. If you read this and understand what it’s like to live with this disease, if you have a few dollars, donate them to The Unforgettable Fund and we’ll see that it gets into the lab for Alzheimer’s research. PLEASE HELP.

FROM THE HOME.4 - Nov. 10

2006-11-10T19:28:00.000-05:00

Looking back over my notes, I saw an entry that was not funny at the time but, it is now. "Dick was not in a good mood at bedtime, so he went to bed fully dressed, shoes and all!"

FROM THE VAULT.5 - Nov. 2006

2006-11-06T12:05:00.000-05:00

Hello Everybody,

Here is a donation update for October 2006.
Online donations= $125.63
Mailed donations= $300.00

Total = $425.63

This brings the total contributions to:
$11,900.15

Thank you very much to all who have participated.

Allan Doherty
FROM THE VAULT

FROM THE LAB.4 - Nov 2006

2006-10-31T21:33:00.000-05:00

by Dr. Malcolm Leissring, Scripps Florida

Q: What’s so special about insulin-degrading enzyme?
A: Let me count the ways….

For those new to this blog, this is the latest entry in a series describing what scientists know about Alzheimer’s disease and how that knowledge is being applied to the development of new treatments. We’ve come a long way, describing how the main culprit is the excessive accumulation of a small protein fragment called beta-amyloid, how this accumulation is based on an imbalance between its production and its destruction, and how the key players involved in the destruction of beta-amyloid are enzymes known as proteases, which chop it into pieces.

Last time I gave a laundry list of proteases that can degrade beta-amyloid, and this month I am going to explain why my lab is especially interested in one protease called insulin-degrading enzyme (IDE). Last month, grant deadlines precluded me from adding a blog entry, but—to make up for it—I have two VERY exciting recent developments to tell you about.

Insulin-degrading enzyme (IDE) was actually the first protease to be reported to be able to destroy beta-amyloid, way back in 1994. The original paper received scant attention however, probably because the study relied on brain tissue that was basically put in a blender—hardly a refined experiment!

It turned out however, that the original investigators were on to something. A few years later, Dennis Selkoe, my post-doctoral advisor at Harvard Medical School, discovered that IDE was the main protease responsible for degrading beta-amyloid even in intact cells grown in a dish.

This did not halt the skepticism however, for a very important reason. Why? Because IDE is mostly present on the inside of the cell (the “cytosol”), whereas beta-amyloid is secreted outside the cell. Many, many papers had shown that IDE was either present on the cell surface or secreted like beta-amyloid, but this did not convince the skeptics—they basically thought that what was really happening was a few cells were breaking open and spilling their guts, and IDE along with them, meaning that people were basically studying an artefact. Scientists thought this, because we know the mechanism by which most secreted proteins get out of the cell, and IDE does not have what it takes to be secreted by this route.

This leads me to the first exciting and surprising discovery, which was published in the October 20th issue of Cell, one of the most prestigious journals in all of science. This finding was from outer space: IDE, it turns out, is the “cellular receptor” for varicella zoster, the virus that causes chicken pox and shingles! A “cellular receptor” is basically a handle on the cell surface that the virus grabs onto, which allows it to enter into the cell.

Why does this disprove the skeptics? Because (a) the virus is far too large to enter the cell on its own, and (b) cells that may have accidentally released IDE by breaking open are dead and gone, and so cannot be infected by the virus. The only remaining possibility is that IDE really is on the cell surface of living cells. Never would I have guessed that the final definitive proof would come from virology--Wow!

Let’s go back to why IDE is particularly important beta-amyloid protease. The work of Dr. Selkoe and others on IDE got the wheels turning inside the minds of another kind of scientists—the geneticists. Genetics is the study of how various traits—such as eye color or susceptibility to diseases—are transmitted through our DNA. Geneticists are heroes in Alzheimer’s research, because they discovered specific mutations in specific genes that cause Alzheimer’s with 100% certainty in a few families that are scattered around the globe. Their discoveries showed beyond any shadow of a doubt (at least in my opinon and that of most Alzheimer’s researchers) that too much beta-amyloid (specifically a long form composed of 42 amino acids) is the cause of Alzheimer’s disease. When the geneticists turned their attention to IDE—lo and behold—they found a significant link! The first papers describing this genetic connection appeared in the prestigious journal Science in the year 2000, led by the laboratories of Rudy Tanzi and Steve Younkin.

The next piece of evidence implicating IDE in Alzheimer’s disease came from a study led by Wes Farris, my close colleague while I was in Dr. Selkoe’s lab. Wes, together with a number of colleagues including Rudy Tanzi and Suzanne Guenette, examined mice that had the IDE gene turned completely off. These mice had significantly higher levels of beta-amyloid in their brains than mice with an intact IDE gene. Quite significantly, Wes looked directly at beta-amyloid degradation in neurons taken from the mice lacking IDE, and found that the amount of degradation of extracellular beta-amyloid was reduced by nearly 95%. That means that IDE is far and away the most important protease involved in the degradation of extracellular beta-amyloid in neurons, though we should not discount the importance of proteases that can degrade beta-amyloid before it is secreted outside the cell.

Hot on the heals of this result, I led a study wherein we generated mice that have twice as much IDE in their brains as normal mice. When these mice were crossed to a mouse model of Alzheimer’s disease, this resulted in a ~50% reduction in the amount of beta-amyloid, even a greater reduction in amyloid plaques—and even prevented the premature lethality that these mice are vulnerable to. This work has been described in previous posts, so I won’t elaborate further.

So is that enough reason to favor IDE?

Let me give you yet another reason, which is the second major (and incredibly exciting) advance that I eluded to. But I need to give you some background first.

How do we know what we know about all these different proteins that we study? Well, its mostly through indirect means. We can purify proteins, and if they are enzymes like IDE, we can measure their ability to do what they do, which in the case of IDE is to cut small peptides like beta-amyloid into pieces. We can measure their mass and shine different kinds of light on them, which can give us clues as to how they might work. But what we really want—the ultimate goal—is to know exactly what the enzyme looks like in 3-dimensional space, down to the individual atoms.

Now, how could we possibly do this? I mean, enzymes are incredibly complex creatures—IDE, for example is composed of far more than 2,000,000 atoms! Peering into microscopes would never ever give us that level of detail. It just ain’t gonna happen.

It turns out there is a technique that can accomplish this amazing feat. It’s called X-ray crystallography. Let’s break it down. Crystals. We all know about crystals. Take salt, for example, or diamonds. The characteristic feature of crystals is that they form a highly regular pattern in 3-dimensional space. Salt crystals are square. Different gem stones, for example, can take on a variety of shapes, like hexagons, tetrahedrons, dodecahedrons, etc.

The regular spacing of atoms within a crystal allows us to determine the relative positions of each atom in space. Exactly how they do this is pretty complex (and beyond me, frankly), but basically they shine light at the crystal of a particular wavelength that is approximately the same size as the atoms in the crystal. The light that you and I see all around us is just a tiny slice of all the wavelengths within the so-called “electromagnetic spectrum.” Microwaves, for example, are a form of electromagnetic radiation that just happen to be perfectly sized to heat water molecules. It turns out that X-rays are the perfect size to look at atoms. What happens is they shine X-rays on the crystal, and some of the light will bounce off the atoms and be deflected. Then they spin the molecule around on one axis and measure all the light that is reflected. Somehow (don’t ask me how), they can use this information to reconstruct the exact 3-dimensional configuration of the molecules in the crystal.

But, relative to common table salt (comprised of only 2 atoms), proteins are HUGE, made of hundreds of thousands to millinos of atoms, and also quite flexible, so it is not a simple matter to get them to form crystals. Basically, scientists just try out hundreds and thousands of different conditions (different salts, pHs, temperatures, etc.), more or less randomly at first, to see if any of them yield crystals. My lab was working vigorously to try to get crystals of IDE. We actually got some crystals, and even took them to an X-ray source, which is a humungous, miles-wide physics facility of which there are only a few in the world. Unfortunately, the data we got were far to “fuzzy” and so could not be interpreted. So it was back to the drawing board.

Well, it turns out that several groups have been trying the same thing with IDE for many years (not too surprisingly). One group got lucky, led by Wei-Jen tang at the University of Chicago. It was more than luck, I can assure you, but luck plays a very big role in science.

Dr. Tang’s group succeeded in getting not just one, but FIVE crystal structures of IDE. What is so cool is that they got structures of IDE together with 4 different peptides that IDE can degrade: insulin B chain, amylin, glucagon and … beta-amyloid! What a feat!

Dr. Tang submitted their paper to Nature (arguably the most prestigious scientific journal), and I was lucky enough to review the paper together with Dr. Selkoe. This process can be tedious, and we went back and forth for 3 different revisions, spanning several months. But I think we, as reviewers, made a significant contribution, as I will try to explain. It also gave us the opportunity to write the “News & Views” commentary accompanying the article in Nature, which—although small peanuts compared to the article itself—certainly was a terrific opportunity.

The structures show that IDE looks like a clam shell, with two bowl-shaped halves connected by a hinge. In all of their structures, IDE was “closed”, completely encapsulating the substrate. As it happened, another crystal structure of a bacterial form of IDE had been solved (but, amazingly, never published on). For this structure, the protease was cracked open. This suggested the protease could open and close, in a manner not unlike the main character in the familiar video game, “Pac Man.”

In the original version of the paper that we reviewed, Dr. Tang made the claim that IDE is normally closed. His rationale was quite reasonable: he found that the two halves of IDE formed very close contacts, which would be predicted to be held together by a physical force known as “hydrogen bonding,” which is something like a weak glue or magnet. While this was reasonable in principle, we felt that other factors might explain the fact that IDE was in a closed state in the crystal structures. One possibility is that the binding of the substrate (i.e., beta-amyloid, glucagon, etc.) held IDE in the closed state [Note, Tang’s team used an “inactive mutant” that was incapable of cutting the substrate into pieces]. Another possibility is that the crystal could only form when IDE was in the closed state—otherwise, you might not get any crystals at all.

Dr. Tang responded with an amazing set of experiments. He introduced mutations into IDE that had two effects. One, the intended goal, was to make it possible to seal IDE shut into the closed state by introducing one amino acid on either side that together could form an irreversible bond under certain experimental conditions. The bond could also be broken under another set of conditions. Thus, he could manipulate the protease at will into a permanently closed state or not. The result, which was not too surprising, was that IDE was inactive when it was clamped shut, since nothing could get in or out.

The other effect of the mutations he introduced was unintended, but—as is the pattern if not the rule in science—led to a most amazing discovery (which was in fact a validation of his original hypothesis). These mutations also disrupted the “hydrogen bonding” that he claimed held the two halves of IDE closed most of the time. The hydrogen bonding can be thought of as a “latch” that holds the two halves of the clam shell shut, much like a latch on a purse. The mutations disrupted this latch.

Here’s the punchline: the mutations accelerated IDE’s ability to degrade substrates by 4000%!!

What does this mean for Alzheimer’s disease? Recall that the transgenic mice that I made had a mere 100% increase in IDE activity. This was enough to reduce the severity of the disease by half. If the IDE inside people’s brains contained the mutations that Dr. Tang introduced, NO ONE would get Alzheimer’s disease, EVER!

But we don’t have those mutations, do we? And we can forget about mutating our IDE genes, at least in the foreseeable future. But what we can do is find DRUGS that accomplish the same feat. In fact, my lab has already discovered molecules that do much the same thing (with some important caveats), although they “only” activate IDE by ~ 350%. Not too shabby for a start, though.

There is a long way to go before this discovery could be translated to the clinic. But what it does accomplish is just as important. It silences the skeptics. It proves them wrong. Most importantly, it gives us hope.

The more donations, the more potential drugs we can test. Please pass it on.

Wrapping Up October

2006-10-29T20:52:00.000-05:00

For the past month, The Unforgettable Fund has been a flurry of activity andposting has been neglected. We welcomed two new board members, Kimberly Jones from the Visiting Nurse Association and Chris Mee, Richard Mee's son who has bravely decided to fill the shoes of his late father. I can't begin to tell you how much this means to all of us. Their expertise is greatly appreciated and their willingness to join us is just incredible.

This is what's new and it's REALLY REALLY important news:

THE STRUCTURE OF AN IMPORTANT BETA-AMYLOID-DEGRADING PROTEASE--INSULIN-DEGRADING ENZYME (IDE)--HAS BEEN SOLVED! That's the coolest biggest thing in the world to us. We're talking BIG BIG possibilities. IDE can devour beta-amyloid, chop it to pieces and spit it out - I love to visualize that happening to the plaques inside one's brain. And, the coolest thing is, the scientists figured out how to make the protease work 4000% faster than it does naturally!

We're not talking about rushing out to the pharmacy; this is in the lab, under the microscope, but we're talking about opening a new door for future treatment and control of Alzheimer's, new drug possibilities, better drug possibilities. There's also tremendous hope for diabetes treatment as well. How can that be, you might ask? Well, I'm the wrong person to ask, but Dr. Malcolm Leissring will be posting "From The Lab" on www.theunforgettablefund.blogspot.com in a few days and he'll explain things. Together with his former advisor Dennis Selkoe, Malcolm wrote the commentary on the paper for "Nature" and knows this area of exploration well, he's been working with it for the past five years!

We are entering an age of fast-pace information and to keep up takes exercise on our part. I believe we, the general public, can understand this science, it just takes willingness and practice. Also, be sure to visit Mona Johnson's blog - The Tangled Neuron - she recently posted an interview with Malcolm on this subject - Insulin Degrading Enzyme (IDE).

The Unforgettable Fund did an Alzheimer's presentation at the Visiting Nurse Association of Florida in Stuart a few weeks ago, Malcolm presented his research and I presented a video my studio made, depicting one spouse's journey through the other spouse's dementia - the story of my mom and dad. It's a beautiful little 5-minute film, made from clips shot more than 50 years ago, when they were young and the future looked so bright. It's intermixed with current clips of my dad at home, trying to figure things out, walking with my mom at the mall, blowing bubbles with my sister. My mom's narration is certainly just one person's story, and each family is different for sure, but I'd bet most of you would see your loved one in this film - there is a universality to Alzheimer's, the all too familiar disconnect. I'll post it if I can ever figure out how to make it web friendly.

My mom is incredible. She's gotten her first computer, mostly due to Richard Mee's insistence before he died, and she is currently in the throws of Mavis Beacon Teaches Typing. She improves every day, has an email account - gertrude@theunforgettablefund.com - and would sure like to hear from those traveling this same uncharted terrain. The type is about 24 point on her screen so there are no visual issues (I can read it across the room!) and she loves being able to connect so quickly with distant family and friends. I'm glad she decided to make the leap into an area she INSISTED on never EVER even trying. She's the best. But whose mom isn't?

And finally, on a very sad note, The Unforgettable Fund extends its sincere condolences to two fellow Alzheimer's bloggers who recently lost loved ones - Bailey's mother and Pamela's father. I encourage you to read the stories woven in these two blogs. It will sound so familiar yet completely unique. Someday, if we can just get there, this disease will be treated, cured and finally, blessedly, forgotten. The sooner the better.

FROM THE VAULT.4 - Sept. 2006

2006-09-23T11:08:00.000-04:00

Hello Everybody,

The donations for last month - $115.00 - brings our total to $$11,204.26.
Thank you to everyone for your generosity. Every little bit counts!

I mentioned last month that I would provide some financial info associated with Alzheimer's Disease and long-term care.

WHAT NURSING HOMES COST, THE REAL COST, IS HARD TO FIND
There are many organizations associated with assisting families and caregivers by providing information regarding Alzheimer's Disease (AD). Many of them provide astonishingly similar information about home care, day-care facilities, financial burden and future projections about the spread of AD.

Here is the general consensus about AD:
- about 4.5 million people are afflicted with AD.
- about 450,000 (10%) are under 65 years old and this percentage is climbing.
- about 450,000 reside in Florida.
- Medicare presently pays one-third of its health-care funds for AD.
- AD is projected to afflict approximately 14-15 million people by 2050.
- the annual cost of caring for an Alzheimer's patient with mild symptoms is $18,400.
- the annual cost of caring for an Alzheimer's patient with moderate symptoms is $30,100.
- the annual cost of caring for an Alzheimer's patient with severe symptoms is $36,132.
- the average direct cost of caring for an Alzheimer's patient from diagnosis to death is $174,000.
- the annual cost of nursing home care in the US is approximately $42,000 to $52,000.
- approximately half of all patients in nursing homes suffer from AD.

American Health Assistance Foundation
http://www.ahaf.org/afrp/cost.htm

American Association for Geriatric Psychiatry
http://www.aagponline.org/p_c/dementia.asp

National Institute on Aging
http://www.nia.nih.gov/Alzheimers/AlzheimersInformation/GeneralInfo/

Agency for Health Care Research and Quality
http://www.ahcpr.gov/clinic/alzcons.htm (september 1996)

National Mental Health Association
http://www.nmha.org/infoctr/factsheets/101.cfm

Alzheimer's Association
http://www.alz.org/AboutAD/Statistics.asp

INFORMATION ON AVERAGE COST OF NURSING HOME CARE IS OUT-OF-DATE
As of July 23, 2006, the following info regarding annual cost for nursing home care can be obtained on the internet:

• "The average annual cost for nursing home care in the U.S. is approximately $52,200."
The American Health Assistance Foundation
[http://www.ahaf.org/afrp/cost.htm]

• "The average cost for nursing home care is $42,000 per year..."
The Alzheimer's Association
[http://www.alz.org/AboutAD/Statistics.asp]

• "The average per patient cost for nursing home care averages $42,000/year..."
The American Association for Geriatric Psychiatry states on their web site:
[http://www.aagponline.org/p_c/dementia.asp]

Two of the three groups are in agreement with the American Health Assistance Foundation, providing a figure 23% higher at $52,000. Which figure is an individual seeking assistance supposed to believe is accurate? Most people would say that to be safe you should figure on the higher amount. That would lead us to believe that the annual cost of nursing home care in the US averages around $52,000.

What's interesting is all of these organizations derive their statistics from Metlife's Mature Market Institute, a company that deals with nursing homes on a national level.

Let's go to the actual reports provided by Metlife's Mature Market Institute:

• 2006 Report: due to be released in August 2006.

• 2005 Report: the average cost is $203 per day or $74,095 annually.
[www.metlife.com/WPSAssets/43838610601138293556V1F2005NHHCSurvey.pdf] page 4

• 2004 Report: the average cost is $192 per day or $70,080 annually.
[http://www.metlife.com/Applications/Corporate/WPS/CDA/PageGenerator/0,4132,P7328%257ES589,00.html]

• 2003 Report: the average cost is $181 per day or $66,065 annually.
[www.bjfim.com/pdf/2003%20MetLife%20Cost%20Survey.pdf] (page 8)

• 2002 Report: the average cost is $168 per day or $61,320 annually.
[www.metlife.com/WPSAssets/17157088621027365380V1FPDF1.pdf] (page 6)

Let's stop there. If we go back to August of 2002 and review the Metlife report, the average annual cost of nursing home care is $61,320. That's not $52,000 and certainly not even close to the $42,000 figure provided on The American Health Assistance Foundation and the Alzheimer's Association's web site. It seems we might have to travel as far back as 2000 to find a figure that matches $52,000. At that time, March 2000, the American Council on Health Insurers came out with a published piece called "Can Aging Baby Boomers Avoid the Nursing Homes?" On page 15, the annual nursing home cost is quoted at $52,000. My attempt to find the average nursing home cost at $42,000 was unproductive. I can only guess that you would have to go back to 1998 or 1997 to find that average annual cost.

ACCURATE INFORMATION IS CRITICAL
We need this information to be accurate, considering how critical the cost of nursing home care is to family members trying to make financial decisions about a loved one's long-term care. By posting out-dated costs, the Alzheimer's Association and The American Association for Geriatric Psychiatry are telling families the average cost of nursing home care is $42,000 when in reality the average costs are $74,095 as of April 2005. By 2006, the cost of nursing home care could reach $80,000. That is almost TWICE the cost being provided for public consumption by major Alzheimer's resources.

Wanting to know why their information wasn't accurate, I decided to e-mail each organization on July 23, 2006. Here's the message I sent to two Alzheimer's Association's contacts and :

Hello,
I am seeking information associated with the cost of long-term nursing home care. On your web site [http://www.alz.org/AboutAD/Statistics.asp], I found the following statement:

"The average cost for nursing home care is $42,000 per year..."

How true is that?

The MetLife Mature Market Institute reported in 2005 that the average cost is $203 per day or $74,095 annually. This info can be found on page 4 at the following address: http://www.metlife.com/WPSAssets/43838610601138293556V1F2005NHHCSurvey.pdf

I would greatly appreciate an explanation as to why there is such a difference in the information presented on your web site today (July 23, 2006) and the info presented by the MetLife report which was released a year ago in August of 2005.

Thank you.
Allan Doherty

Similar e-mails were sent to the the following contacts:

American Association for Geriatric Psychiatry

American Health Assistance Foundation

Gayle Handiboe, Manager of Development
Kathleen Honaker, Executive Director

For each organization I replaced the price quote attributed to their website ($42,000 or $52,000) and the URL where their quote appeared.

RESPONSE FROM AMERICAN ASSOCIATION FOR GERIATRIC PSYCHIATRY
On Monday, July 24, 2006 at 10:39 am, the following e-mailed appeared:

Hello Mr. Doherty,
Thank you for writing to the American Association for Geriatric Psychiatry. The page you refer to on our site was written and posted in 2001. We will be taking it down to update it and will re-post later in August.
Best regards,
Kate McDuffie
Associate Director, Communications
American Association for Geriatric Psychiatry
www.AAGPonline.org
Geriatric Mental Health Foundation
www.GMHFonline.org
kmcduffie@AAGPonline.org
Phone: 301.654.7850, ext. 113

My follow-up question:

Kate,
Thanks so much for the immediate response. Do you have any idea why this
info hasn't been updated since 2001? I'm sure many families seeking
information over the years have used this info as a basis upon which to make
decisions.
Allan Doherty

Kate's response to the follow-up question:

Hi Mr. Doherty,
Thanks for sharing your concern. We're adding new staff and will strive to keep our website material updated.
Best regards,
Kate

RESPONSE FROM AMERICAN HEALTH ASSISTANCE FOUNDATION
Monday, July 24, 2006- No Response
Tuesday, July 25, 2006- No Response
Wednesday, July 26, 2006- No Response

At 10:30 pm, Wednesday, July 26, I re-sent the same e-mail to every contact address on the www.ahaf.org website. At 2:29 pm on Thursday, July 27, 2006, I received the following e-mail:

Dear Mr. Doherty,
Gayle asked me to respond back to your email. Thank your for your email.
Some time ago, we had decided to use government statistics on our
website and in our literature. After reviewing your email, we are
planning on making an exception to this rule. The government numbers are
getting outdated and the MetLife figures are probably more accurate.

Thank you for bringing this to our attention.

If you have any further questions, please do not hesitate to contact us.

Kind regards,
Ed Berger

RESPONSE FROM THE ALZHEIMER'S ASSOCIATION
At 2:40 AM on Monday, July 24, 2006, I received the following e-mail:

Thank you for contacting the Alzheimer's Association, a national leader in the fight against Alzheimer's disease and related disorders. We believe that it is critical for people with dementia and their families to receive information, care and support early in the fight against the disease. The Alzheimer's Association appreciates the opportunity to provide you with the information you requested.

Your request for information is being forwarded to the appropriate department and a representative will contact you shortly regarding your request. We generally respond to every request within 48 hours, however, if you have still not received a response with 5 business days, please e-mail us at info@alz.org and we will look into this request.

If you are interested in receiving further information, our contact center can assist you with general information, education and referral to a local Alzheimer's Association Chapter. In addition, we provide care consultation with Social Workers to assist those who require decision-making support, crisis assistance and guidance during transition. You may contact the Alzheimer's Association, twenty-four hours a day, seven days a week, by calling our toll-free number at 1-800-272-3900.

Sincerely,
Alzheimer's Association
Contact Center

I re-sent the same e-mail Wednesday, July 26, 2006. No response at all.

On Wednesday evening, I contacted "the Alzheimer's Association, twenty-four hours a day, seven days a week, by calling our toll-free number at 1-800-272-3900." A women named Elizabeth answered. I asked about the long-term cost information posted on their website. She responded that "the information was factual when the report was prepared." When I asked why the information was 4-5 years out-of-date, she said she would pass this information on to others who would review the question, research the information and get back to me. I gave her my name, address, e-mail address and cell phone number.
Thursday, July 27, 2006- No Response
Friday, July 28, 2006 - No Response
Saturday, July 29, 2006- No Response

On Saturday, I called the 800 number again and got in touch with Elizabeth again. I then dialed the National Office telephone number @ 1-312-355-8700 (retrieved from web page). The phone rang 20 times before I decided to hang-up. No message machine picked-up.

I waited until the first week in August to contact the Alzheimer's Association. This time I called the Media Relations telephone number. When I asked them if they were responsible for the misleading and out-dated information on their web site, I was immediately transferred to Pat Kenkoski , The Librarian. She said they make an effort to update the web site whenever they receive tangible information that they can use. The info from the 2000 Metlife Mature Market Institute was tangible so they used it. When I mentioned that every year the Metlife's Mature Market Institute comes out with a report in August detailing the changes in nursing home cost throughout the country, she responded by saying they intended to update the information this year (2006). I then asked why the site hadn't been updated for years 2001, 2002, 2003, 2004 and 2005. Her response, "We intend to update the info this year." I then summarized for her, "So you know that Metlife reports come out every year since the 1990's. Your association hasn't updated it's website for the past 5 years and knows that the info is out-dated?" Her single word response...Yes. I thanked her very much for her honesty and told her that I looked forward to the updated website info.

THE RESULT (AS OF SEPTEMBER 10, 2006)
The American Health Assistance Foundation updated their information to reflect the Metlife 2005 information. See the following:
http://www.ahaf.org/afrp/cost.htm
As you can see it is a simple html text page that doesn't feature the logo or navigation bar that are featured on every other page on their website. We thank them.

The American Association of Geriatric Psychiatry took the web page detailing their out-dated information off line. Check out the following:
http://www.aagponline.org/p_c/dementia.asp
But I am puzzled why I found the same innaccurate information on a new page:
http://www.gmhfonline.org/gmhf/consumer/factsheets/dementia_factsheet.html.
On this web page the following info is presented; "The average per patient cost for nursing home care averages $42,000/year,..."

The Alzheimer's Association continues to post their out-dated information. Please check the following:
http://www.alz.org/AboutAD/Statistics.asp
"The average cost for nursing home care is $42,000 per year (10)..."
Here's footnote (10):
(10) Rice, DP; et al. “The Economic Burden of Alzheimer’s Disease.” Health Affairs, Summer 1993; 12(2): 164 – 176.

SOLUTION
These institutions, and the websites they publish, are resources established to assist families struggling with the agonizing choices and decisions that Alzheimer's presents. There is none harder than the question of nursing home care. Alzheimer's disease is tough enough without adding incorrect and out-dated information to the mix. The following is a list of web pages with contact information, in case you would like to call, email or write a letter.

Alzheimer's Association
http://www.alz.org/Contact/contact.asp
National Office
225 N. Michigan Ave., Floor 17
Chicago, IL 60601-7633
tel: 1.800.272.3900
tel: 1.312.335.8700
fax: 1.312.335.1110

American Health Assistance Foundation
http://www.ahaf.org/SubIndex/Contact_Frame.htm
American Health Assistance Foundation
22512 Gateway Center Drive
Clarksburg, Maryland 20871
Phone: 1-800-437-2423
Phone: 1-301-948-3244
Fax: 1-301-258-9454
Information Specialist: Isabel Quiroz [iquiroz@ahaf.org]

American Association of Geriatric Psychiatry
http://www.aagponline.org/
AAGP
7910 Woodmont Ave
Suite 1050
Bethesda, MD 20814-3004
Phone: 1-301-654-7850
Fax: 1-301-654-4137
Email: main@aagponline.org

I will continue to investigate information associated with Alzheimer's care and bring you the results.

Thank you,
Allan Doherty
FROM THE VAULT

FROM THE HEART.3 - Sept 2006

2006-09-13T23:21:00.000-04:00

I was thinking today about how dad always responded to tone of voice. Long after the words became meaningless he still responded to tone of voice. Perhaps tone carries our intention on a deep musical level and the brain remembers the emotional content long after words fade away.

Barbara McNally Reuther

FROM THE HOME.3-Sept 2006

2006-09-11T10:55:00.000-04:00

Last month Gertrude was unable to post. She was in Italy with two of her daughters. This is her picture, taken at the Piazza Navona. She's back and offers the following:

"It may, or may not, console you to know that many, many thousands of caregivers, right now, are suffering exactly the way you are."

FROM THE LAB.3 - Sept. 2006

2006-09-04T16:28:00.000-04:00

by Dr. Malcolm Leissring, Scripps Florida

Q: How is beta-amyloid cleared from the brain?
A: Primarily by enzymes known as proteases that cut beta-amyloid into pieces.

In previous entries to this series, we showed that the central culprit in Alzheimer’s disease is beta-amyloid, a short protein fragment that has a pronounced tendency to stick to itself, forming toxic aggregates that eventually accumulate into the plaques that litter the brains of Alzheimer’s disease patients. By using the analogy of an overflowing kitchen sink, we also described two fundamental strategies for combatting the disease: (1) inhibiting the production of beta-amyloid (“turning down the faucet”), and (2) boosting the clearance of beta-amyloid after it is produced (“unclogging the drain”).

This month, we delve a bit deeper into the unclogging-the-drain approach by briefly introducing several enzymes that are primarily responsible for clearing beta-amyloid. These enzymes work by cutting beta-amyloid into pieces, and are called “proteases.” As we mentioned in previous posts, the importance of these proteases to Alzheimer’s disease was recognized only recently. This is a highly significant development, because each of these enzymes represents a new target for the development of drugs. Before, most drug research was focused on only two principal targets (the secretases that are responsible for producing beta-amyloid), but now have over a dozen targets to investigate, significantly increasing the chances that we will find at least one drug to combat this terrible disease.

Our lab is especially interested in one particular protease named insulin-degrading enzyme. Next month we will expand on the reasons why this is a particularly attractive target. We also hope to announce a very significant advance in our understanding of insulin-degrading enzyme and its potential as a therapeutic target that is expected to be published in the prestigious scientific journal Nature in the coming weeks.

For the moment, we will limit ourselves to simply listing some of the proteases that are known to degrade beta-amyloid, with short descriptions of their potential therapeutic value.

Insulin-degrading enzyme. As its name suggests, this protease also cleaves insulin, and it has been implicated in both Alzheimer’s disease and also diabetes. This is significant because having diabetes can increase your risk of developing Alzheimer’s disease, suggesting that defects in this protease might underlie both diseases. As we will describe next month, a considerable amount of research suggests that insulin-degrading enzyme is an especially attractive therapeutic target.

Neprilysin. This is by far the best characterized beta-amyloid protease. Our group showed that increasing the activity of this protease can completely prevent Alzheimer’s disease in a mouse model of the disease. This does not, however, mean that the other proteases are less important—we were simply lucky enough to get very large increases in this protease in our experiment. It is very likely that increasing the activity of any beta-amyloid protease can achieve the same effect.

Endothelin-converting enzyme. This protease was shown to degrade beta-amyloid by Chris and Elizabeth Eckman, our close collaborators at the Mayo in Jacksonville, FL. Recent evidence has identified fragments of beta-amyloid in human brains that appear to match the fragments generated by this protease, suggesting it might be especially important in the normal degradation of beta-amyloid.

Plasmin. This protease, found principally in the blood stream, is involved in the degradation of blood clots. There are several exciting things about this protease. First, unlike the preceding proteases, it can cut beta-amyloid even after it has started to clump together. Second, it is normally inhibited by another protein called PAI-1. This is important because plasmin can be easily activated by drugs that block the plasmin-PAI-1 interaction. Indeed, this very approach is being pursued by scientists at Wyeth, and they have shown that their drugs can slow Alzheimer’s disease in mice.

Matrix-metalloproteases (MMPs). A mouthful, I know, but these are an important class of about 15 related proteases. Recent studies have shown that certain MMPs can cleave beta-amyloid, even after it has clumped together. As was true for plasmin, these proteases can be turned on and off, making it possible to develop drugs that do the same thing. A potential problem is that excessive MMP activity is associated with arthritis and cancer, making it potentially unwise to target these for the treatment of Alzheimer’s disease.

Angiotensin-converting enzyme (ACE). This protease is involved in the regulation of blood pressure. It has recently been shown to cleave beta-amyloid in cells and in mice, and there is genetic evidence that implicates this protease in Alzheimer’s disease. Importantly, millions of people use ACE inhibitors, which could conceivably affect their risk for Alzheimer’s.

As you can see, this is already a long list of proteases, and unquestionably it will get longer still with further research. The longer, the better, of course, since any one of these proteases might hold the key to a cure for this mind-robbing disease.

FROM THE ROOFTOPS - August 2006

2006-08-29T22:01:00.001-04:00

Part of the mission of The Unforgettable Fund is to serve as a voice. But unless there is active listening, understanding, and exchanging of ideas – a voice is meaningless.

In keeping with that mission, several members of the Board of Directors have dedicated time and energy in reaching out, answering questions, educating others, and exchanging ideas about Alzheimer’s Disease.

• In June, Alzheimer’s Community Care presented the 2006 Alzheimer’s Educational Conference in West Palm Beach, Florida. Dr. Malcolm Leissring, Assistant Professor and research scientist at Scripps Florida and Vice President of The Unforgettable Fund, was a guest speaker for one of the sessions, sharing recent developments in untangling the tangles of Alzheimer’s Disease. Attendees were impressed by the approachability of Dr. Leissring – how he could explain the scientific complexities of the disease in terms that the non-scientist could understand. Questions posed to Dr. Leissring were answered with true respect and dignity. Alzheimer’s Community Care celebrated their 10th Anniversary this year and with the mission: Placing a safety net around both patient and their care-givers everyday. Visit www.alzcare.org for more information.

• The Florida Legislature created the Florida Center for Universal Research to Eradicate Disease (FL CURED) to engage in activities and promote actions that will expedite the discovery, translation, and dissemination of cures for the most deadly and widespread diseases. The Florida Department of Health presented 2006 FL CURED, Meeting of the Minds – Research for New Insights and Innovative Cures. The Inaugural Summit was successfully held in Palm Beach Gardens at the PGA National Resort and Spa on August 1st, 2006. Dr. Claes Wahlestedt, Director of Neuroscience at Scripps Florida and secretary of The Unforgettable Fund, was “Champion & Facilitator” for the Aging/Neurosciences Workshop. And adding perspective from the caregivers’ point-of-view was Patty Doherty, founder of The Unforgettable Fund. Exchanging information, listening to life lessons, and active dialogue made the Aging/Neurosciences receive the highest scores out of all the workshops held. To learn more, visit www.flcured.org

• And, alas, due to the approach of Hurricane Ernesto, a free seminar entitled: Alzheimer’s Disease: What is it? And what are scientists doing about it? By Dr. Malcolm Leissring - has been cancelled. The event hosted by the Visiting Nurse Association of Florida will be rescheduled at a later date. Check www.vnaflorida.org for details.

FROM THE VAULT.3 - Aug. 2006

2006-08-19T09:26:00.000-04:00

Hello Everybody,

It is time to take a look at all the generous donations provided during the past month.

Total contributions: $553.32
Funds to be donated to Scripps: $553.32

We would like to thank everybody for contributing and helping to spread the word. Your continued support helps to continue research that will assist the scientists at Scripps Florida in their effort to find a cure. You are making a difference!!

Thank you.

Allan Doherty
From The Vault

FROM THE LAB.2 - August 2006

2006-08-01T21:43:00.000-04:00

by Dr. Malcolm Leissring, Scripps Florida

This is the second installment on our monthly series discussing the science of Alzheimer’s disease research and describing the work we are doing at Scripps Florida to develop effective treatments.

Lesson 2.

Q. What causes the increased beta-amyloid levels that trigger Alzheimer’s disease?
A. An imbalance between beta-amyloid production and clearance.

Last month, I introduced the main culprit in Alzheimer’s disease—beta-amyloid—a small protein fragment that has a strong tendency to stick to itself, forming aggregates that are highly toxic to neurons (nerve cells) and eventually form the plaques that litter the brains of Alzheimer’s patients. This month, I’m going to discuss two different approaches that are being developed to reduce the levels of beta-amyloid in the brains of Alzheimer’s patients.

At this point, I would like to introduce an analogy between Alzheimer’s disease and something we can all understand—an overflowing kitchen sink. In this analogy, beta-amyloid is represented by the water, the brain is represented by the sink, and the disease (too much beta-amyloid) is represented by the flooding that occurs when the sink overflows.

By way of this analogy, we can see that there are two potential causes for the disease (flooding)—too much beta-amyloid production (the faucet is turned up too high), or insufficient clearance of beta-amyloid (the drain is clogged). Likewise, there are two potential treatments: lower beta-amyloid production (turn down the faucet) or increase its clearance (unclog the drain).

Until recently, almost all Alzheimer’s disease research was focused on the faucet—the enzymes that produce the beta-amyloid fragment by cutting it out from its precursor molecule. These enzymes are known as “secretases,” and there are two of them: beta-secretase, which makes the first cut, and gamma-secretase, which makes the final cut. Gamma secretase is especially important, because it is a somewhat “sloppy” enzyme that is capable of cutting at different sites, thereby producing beta-amyloid fragments of different lengths. This point is critical, because longer beta-amyloid fragments are much more prone to clump together and much more toxic, whereas some evidence suggests the shorter forms might actually be protective. This is similar to the concepts of “bad cholesterol” and “good cholesterol.”

Work in my lab (the Leissring lab) is focused on the drainage system, particularly a different set of enzymes that destroy beta-amyloid by cutting it into pieces. We were the first to show that increasing the activity of these enzymes can completely prevent Alzheimer’s disease in mouse models (Leissring et al., Neuron 2003), providing an essential proof that this approach may work in man.

There are several aspects of the “unclogging the drain” approach that are particularly exciting from a therapeutic perspective. There are many more enzymes involved in beta-amyloid clearance, and targeting any one of these enzymes can effectively treat the disease—as our work has shown (Leissring et al., Neuron 2003). More enzymes means more drug targets, thus greatly increasing the chance that at least one drug can be found to safely treat the disease.

Intriguingly, by targeting the drainage system instead of the faucet, it is possible to develop treatments that don’t even need to enter the brain. This idea is based on the recent revelation that beta-amyloid can go back and forth between the brain and the blood stream. Our group has been exploring the novel idea that clearing beta-amyloid from the blood stream can lower beta-amyloid in the brain, and this idea is just now proving to be correct in animal models of the disease. By contrast, drugs targeting the secretases involved in beta-amyloid production (the faucet) are absolutely required to enter the brain, because that is where most beta-amyloid is produced. Getting drugs into the brain is not only difficult, but also carries many risks, so this new approach is very exciting.

As you can see, we have our work cut out for us—we are working on an exciting new approach to treating Alzheimer’s disease, one that involves far more potential drug targets than the two involved in beta-amyloid production, which themselves have dominated Alzheimer’s drug development for the past 10 years. The potential of this new approach has barely been tapped, with many novel drug targets awaiting therapeutic evaluation. At Scripps Florida, we have drug-screening capabilities on a par with large pharmaceutical companies, which is very unique for an academic institution. By contributing to The Unforgettable Fund, donors can help to advance this promising new research avenue, which has great potential for discovering novel and truly disease-modifying therapies for this devastating disease.

Reference:

Leissring MA, Farris W, Chang AY, Sun X, Walsh DM, Frosch MP & Selkoe DJ. Enhanced proteolysis of β-amyloid in APP transgenic mice prevents plaque formation, associated pathology and premature death. Neuron 40:1087-93, 2003.

RICHARD MEE AND THE STAR

2006-07-23T23:37:00.000-04:00

Today The Unforgettable Fund normally posts FROM THE ROOFTOPS, where we yell e-roof to e-roof about the work being done to fight Alzheimer's. But today we are bringing you some of the saddest news we've yet to face. On July 18, 2006, our Board Member, Richard Mee, died. I can't shout it, I can barely write it.

The morning I heard the news, I looked out the window and couldn't understand how the sun could be shining in a sky so blue it hurt. How could Richard be dead? Even though he was a nursing home resident, and sick as can be, I never thought he would die. He always said how GREAT he felt. Especially lately. He was up to something...

On Father's Day - was it just a month ago - Richard's son Chris bought him a laptop. And before anyone could say "Hey, you can't do that!" he hooked it up to the phone line in his room and opened an AOL account. He was on fire with the idea of teaching everyone in the nursing home how to get online and email their kids. It was incredible! He would put the laptop on his bed, and they'd all pull up their wheelchairs to get their "lesson." Push this button to turn it on, this is called a cursor, and you have to move it with your finger like this, not like that, like this, that's right. He was so incredibly patient and encouraging. He had this magic way of bringing out the best in people, even people one would never suspect could use a computer. He was bound and determined to make my 83-year-old mother learn and she wanted no part of it. When he threatened to take the religious picture out of his room (which she had forced on him in the first place) she had no choice but to relent.

He would email the children of his nursing home "students" and when the distant family member would reply, he'd send out the alert to "Go get so-and-so." Then the relay would begin, wheelchair to wheelchair, until so-and-so was reached, and they'd wheel over to Richard's room where he would read their child's email message. The only person who lit up more than the message getter, was Richard the message reader.

Nursing homes are grim places, I'll leave it at that, but this man streamed sunlight, blanketing everyone in his warmth, his humor and his love.

Richard was my first Board Member of The Unforgettable Fund. His encouragement, when it was just an idea, is what helped launch this initiative, when it would have been easier to just forget. He saw what we went through with my father, he heard all of it. A truer friend, I could never have found. He knew exactly where I was and without him, and that tremendous heart of his, I'm not sure I would've believed I could do anything to fight Alzheimer's disease. One day, he looked at me shaking his head. He started wheeling away and over his shoulder said, "I figured out what your problem is." I said "Tell me." He replied, "You're a good person."

When we hatched the idea of The Unforgettable Fund, I would question it constantly. "This is a dumb idea. Richard, is this a dumb idea? Do you think this is a dumb idea? Maybe this is just a dumb idea." And he would always say, "Patty, even a dumb idea needs time to prove itself, so give it time. Until then, keep working." He also told me, the last time I saw him, that he'd see me soon. He was true to his word, but not in the expected way...

The night of Richard's death, I had just gotten home from my mother's house. My sister, mother and I had been laughing and crying. Mostly laughing, his sense of humor was legendary with the McNally clan. Anyway, I got home and was standing by my car, looking up at the night sky, only two stars in an immense sea of darkness. With a broken heart, no room for anything but sadness, I called his name. The moment I did, in that exact instant, I saw a shooting star.

Richard still delivers the message.

FROM THE VAULT.2 - July 2006

2006-07-18T20:35:00.000-04:00

Hello Everybody,

It is time to provide the financial picture that has been painted this past month.

Total contributions: $71.58
Funds to be donated to Scripps: $71.58

Though this is a far cry from the $10,464.36 donated last month, we anticipate continued support in the future as word of our efforts spread.

Thank you for your continued support.

Thank you.

Allan Doherty
From The Vault

FROM THE HEART-July 2006

2006-07-11T22:20:00.000-04:00

"Will I lose my dignity ? Will someone care ? Will I wake tomorrow from this nightmare?"

Lyrics from a song in RENT that always remind me of my father's struggle with Alzheimer's Disease. The slow steady surrender into complete dependence. Living up north while he was ill, I felt so disconnected and useless at times. There was so little I could do or contribute.

My mother and sisters worked so hard to give my father's life dignity and meaning even as all of his faculties were diminishing. Finding interesting things to amuse him or make him smile, helium balloons and water pistols come to mind. It was always changing, as was his care but there was always a sensitive hand reaching out to him to stroke his forehead or caress his cheek and someone to sit beside him and just simply "be" with him.

I think about the great love he received from family and friends and caregivers and I know that he gave love as well. We could all see it in his eyes and ocasionally hear it in the sound of his voice and one thing about him never changed, he gave us all he could.

Barbara McNally Reuther

FROM THE HOME.2-July 2006

2006-07-08T22:14:00.000-04:00

Trying to be patient and not giving way to anger on difficult days benefits the caregiver even more than the patient.

FROM THE LAB-July 2006

2006-07-01T13:39:00.000-04:00

by Dr. Malcolm Leissring, Scripps Florida

Welcome to “From the Lab,” a series of posts written by myself (Malcolm Leissring) and Claes Wahlestedt, two Alzheimer’s researchers at Scripps Florida, and edited by Susan Shepard, a public high school teacher with a talent for making complicated topics easy to understand. In this series, we hope to explain in plain language, first, what scientists believe is the cause of Alzheimer’s disease, and second, what we are doing in the lab to develop treatments based on that understanding.

Lesson 1.

Q: What causes Alzheimer’s disease?
A: Too much “beta-amyloid.”

We all know that Alzheimer’s is a mind-robbing disease, what doctors call “dementia.” Symptoms typically start with relatively benign memory loss (“Where are my keys”), and worsen progressively until the victim cannot lay down new memories, which leads to confusion and sometimes psychosis.

The brain of an Alzheimer’s patient eventually shrinks, due to the loss of nerve cells that are responsible for all of our mental activities.

So what causes all this damage? Thanks to about 2 decades of progress, we now know. The culprit is a small, sticky piece of protein, called “beta-amyloid.” I know, I know—“beta-WHAT?” Why do scientists have to use these fancy terms? Why can’t they speak English?

Let’s try to break it down. The term “amyloid” actually means “starch-like.” The term is an accident of history, developed by scientists in the 1800s. As it turns out, amyloid actually had nothing to do with starch (the stuff you find in potatoes and pasta, or dry-cleaned shirts). However, it is important to remember that these pioneering scientists did not have all the wonderful tools and knowledge that we do today. Back in the 1800s, people who studied diseases used to take slices of tissue from deceased patients, and apply different colored dyes to them and look at them under a microscope. Back then “amyloid” referred to a special kind of “clump” they found in many different diseases. What made it special was that the clumps would glow bright green (like a fluorescent marker) when they treated the tissue with certain dyes.

These scientists found “amyloid” deposits in a lot of different diseases, and they were found to be formed by pieces of proteins, which were eventually given different names: “amyloid-A protein,” for example, was found in many different organs in patients suffering from a certain disease. The amyloid found in Alzheimer’s disease was restricted to the brain and was termed “amyloid-beta protein,” which has subsequently been shortened to “beta-amyloid,” or sometimes to the even shorter version, “A-beta.” Clumps of beta-amyloid make up the “plaques” that litter the brains of Alzheimer’s patients.

We will get into the nitty-gritty details later, but what we have learned over the past 20 years or so is that Alzheimer’s disease is caused by excessive accumulation of beta-amyloid, which likes to stick to itself and form plaques, which more or less clog the brain and interfere with it’s functioning.

For years, beta-amyloid was believed to be an abnormal protein, something present in Alzheimer’s victims, but not in normal people. This was true for some amyloid diseases, but turned out to be incorrect for Alzheimer’s disease. In fact, all of us produce beta-amyloid, and all of us, if we make it to ~40 years of age, get some small plaques in our brains.

The difference between Alzheimer’s disease and no Alzheimer’s disease is simply a reflection of the amount of beta-amyloid that accumulates.

Recently, we learned that beta-amyloid levels reflect the balance between their rate of production and their rate of clearance, or removal, from the body. My lab studies special enzymes that breakdown beta-amyloid, and we have shown in mouse models of Alzheimer’s that we can completely prevent the disease from forming if we increase the levels of these enzymes. This is a completely new idea, and may explain the majority of Alzheimer’s disease cases. At Scripps Florida, we are working very hard to turn this advance in our understanding into viable treatments for this devastating disorder.

More to come.....

--Malcolm

FROM THE ROOFTOPS-June 2006

2006-06-25T10:17:00.000-04:00

It had been a long journey leading to this day…

Presenting the first check of The Unforgettable Fund to be used exclusively for Alzheimer’s research at Scripps Florida. Dollars collected in sums great and small, collectively hoping to make a difference at the very source where the fight against Alzheimer’s Disease begins – the lab.

It was a momentous day.

But the journey had been so very long – as anyone touched by the disease knows. I – and this is way outside my comfort zone, writing in first person – met Patty Doherty in the professional world. My respect for her work, talent, imagination, and integrity lead to a friendship. I never knew Patty when Alzheimer’s Disease wasn’t a part of her daily life. The struggles, the tears, the pure frustration of knowing that there were no cures – only band-aids and a downward spiral for her father. Little did anyone know that it would be an eleven-year spiral before her beloved father was released from this horrific disease in January, 2006.

It had been a long journey leading to this day…

Then there was hope: the announcement in November 2004 that the world-renowned, leader of scientific discovery in diseases that plague mankind, The Scripps Research Institute was coming to our backyard. Even better, Scripps Florida would have a lab dedicated to Alzheimer’s Disease research! And Patty, being Patty, made it her personal mission to seek out Scripps Florida’s lead researcher in Alzheimer’s Disease, Dr. Malcolm Leissring.

It had been a long journey leading to this day…

There will always be a need for philanthropy – after all, it takes large sums of money to build research labs (about $375 per square foot) and purchase the incredibly expensive equipment that is shared by all the sub-labs within a scientific research and development building. But as NIH funding, the primary funding source for true scientific discovery, continues to be cut at the Federal level, the need for dollars in the individual lab grows. And for those of us that are not at the “philanthropy level” and wishing to make a difference, The Unforgettable Fund provides a venue to memorialize a loved one and to direct dollars where the fight against Alzheimer’s Disease begins – the lab.

It had been a long journey leading to this day…

And there we were – presenting a check to Scripps Florida for the specific use for Alzheimer’s research. It had been one month since the launch of The Unforgettable Fund. Every penny of every dollar accounted for.

I was struck by the humbleness, generosity of spirit, and graciousness of the Scripps Florida team. Dr. Harry Orf made it feel as if The Unforgettable Fund had just donated $10 million, Dr. Malcolm Leissring patiently explained his research, and Candace Walker arranged a tour that was truly mind boggling for the mere mortal.

Awed at the experience, I noticed Gert McNally – Patty’s mother, recently widowed – intently watching the multi-million dollar, big yellow machine that cut the testing time of potential drugs from years to months. It was if she were willing the machine to work faster, for the scientists to put more compounds into it and get the answers that would eradicate Alzheimer’s Disease forever.

It had been a long journey leading to this day…

FROM THE VAULT-June 2006

2006-06-18T22:54:00.000-04:00

Hello Everybody,

Here's a quick financial report about the first five weeks of The UNFORGETTABLE Fund's existence.

The checking account for The Unforgettable Fund was opened on May 8, 2006.

An initial donation check of $100.00, from Ellen B., was used to open the account. That $100.00 deposit will remain in the account until the account is closed.

CONTRIBUTIONS- [ http://www.theunforgettablefund.com/donate.php ]
Total Contributions $10,534.62
Minus Ellen's Check $ 100.00
Funds donated to Scripps $10,434.62

The check for $10,434.62 was hand-delivered to the Scripps Research Lab on June 15, 2006.

A special "Thank You" goes out to everybody who donated and made this first contribution possible!!!

We hope that you will continue to spread the word of The Unforgettable Fund to family members, co-workers and individuals you encounter everyday, so that the fight against Alzheimers Disease can continue!!

In the next posting of "From The Vault", we'll look into some of the expenses related to Alzheimers Disease as well as a financial update.

Thank you.
Allan Doherty
"From The Vault"

FROM THE HEART-June 2006

2006-06-12T18:35:00.000-04:00

By the time that this gets posted I will be on a plane to Colorado to climb Pikes Peak. Just one of the many adventures that run through my blood, and hit my brain, that need to be exercised. It's the same blood that ran through my dad. It's because of him that I have this insatiable drive for excitement and challenge. He was a thrill seeker, a dare-devil, a go-getter at any cost.

When he first started going down hill, I didn't have a clue about Alzheimer's Disease, but a challenge was presented to care for him, and without a thought I packed up and moved to Florida to be in the game. I really don't know why I did it, I had just graduated from college and I guess I wasn't really thinking. I just did it. Had I thought it through, read some medical journals, thought about my career, my future, my fiancé, myself...I would never have done it. There are a few times in my life, that in retrospect I am grateful that I just reacted and didn't weigh out the consequences.

Walking into his decline, and my mothers pain makes the thought of climbing Pikes Peak as steep as the Florida Trail. None of us had a clue what to do, so we winged it. That is what my dad would have done. And then he would pour himself a drink and smile and do what needed to be done. Period. We skipped the drink, but we read books, we went to support groups, we wrote out questions for the real specialists, we made up schedules, we cried, we laughed our butts off and many times I personally wanted to bang my head against the wall. Hard.

The beginning was so confusing. Looking back, I must have really had God guiding me because nothing scared me or turned me off or made me really want to quit. I just kept moving forward as he kept moving backward. Each backward shift caused us fear, sadness, initial chaos and pain.

First he forgot where he lived, then he forget my name, then he started talking to himself in the mirror thinking it was some old stranger reflecting back at him, then he started falling, then he started to forget what he was supposed to do in the bathroom, then he started fighting with the guy in the mirror and talking to the people on the TV, then he needed help in the shower, then we had to wallpaper every mirror in the house to get rid of the guy in the mirror who wouldn't leave my dad alone, then he couldn't walk, then he couldn't talk, then he was just quiet in his wheelchair and now he is in Heaven. And his bride of thousand years misses him so much. And that is the biggest rub in all of this. To have had to watch her, watch him melt into eternity.

My dad and I were never close. I was the youngest and by the time I came along he had seen it all and done it all, but I know at the time that he gave me his very best. I don't remember any long conversations or sitting on his knee or holding his hand growing up...That all changed though when he got AD. We sat for hours holding hands and we had long, long conversations that made sense to absolutely nobody but us.. We went everywhere together. He thought I was funny and he really was funny. We laughed together at really stupid things. We teased eahother. He smiled at me. I sensed his love and appreciation. He didn't know who I was, but he liked me most of the time. He would pat on the seat beside him on the couch for me to sit by him, neither of us had time for that when I was growing up. But with nothing but time on our hands during his illness, we had days, and weeks and months, even years to make up for the lost years. I guess we made up for my lost years during his lost years. God has a way of always working things out, doesn't he? When we let him?

It was a hard time of life for all of us, but also a time of tremendous healing.

Jackie McNally Seymour

FROM THE HOME.1 -June 2006

2006-06-06T18:03:00.000-04:00

Alzheimer's came to us one, hard step at a time and that's the only way we could survive it - just one slow step at a time. We went from one different thing at a time to another. Thank God it doesn't come on all at once. Right now, there's no way to stop it.

greetings

2006-05-14T13:09:00.000-04:00

Welcome! My name is Malcolm Leissring, and I am the chief Alzheimer's researcher at Scripps Florida. I am so delighted to be working with Patty to fight this horrible disease. In the lab we have been able to prevent Alzheimer's disease in mice, and we are working on treatments that can do the same thing for your loved ones. Scripps Florida is an awesome, one-of-a-kind place, with mind-boggling technologies that aren't available anywhere else, like our $10-million Kalypsys robot that can screen hundreds of thousands of candidate drugs in a single day.

Although the technology is in place, we nonetheless need money to take advantage of it. It's kind of like having a Nascar race car in your garage, and just needing some money to fill up the gas tank. With your help, we can realize our dream to conquer this disease. Unlike a lot of other organizations, every single penny of your dollar will go straight to Alzheimer's research right here at Scripps Florida.

There is so much to say, I will have to leave it for future posts. I can try to answer people's questions, but I must emphasize that I am not a clinical doctor, so I cannot dispense medical advice. Nonetheless, it is our sincere desire to educate people about the disease, and we are planning upgrades to the site that aim to do that.

It is my sincere belief that the maximum progress on this disease can be made through the efforts of scientists and non-scientists working together. You need our expertise, and we need your support. Together, we can make a difference.

Thank you for visiting the site, we hope to hear from you soon.

Regards,

Malcolm

2006-05-13T18:51:00.000-04:00

Welcome to The Unforgettable Fund - one family's effort to shine light on a very dark disease.

Alzheimer's creeps into the minds of our loved ones and breaks the hearts of their families and friends. I was lucky. When my father was diagnosed, my six brothers and sisters helped to carry the tremendous weight of this disease. For eleven years, we traveled through some very tough terrain. Our father died on January 3, 2006 and in his memory, we created The Unforgettable Fund - www.theunforgettablefund.com - to support Alzheimer's research by remembering loved ones. We launch on Monday, May 15. This blog is a component of that effort.

To all of you who feel alone in the middle of this struggle, we're here to tell you that you're not. We can help by sharing what we know and what we still have to learn. This is the place we'll do it.