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May 20, 2007

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Patty McNally Doherty

Alzheimer's reminds me a lot of AIDS, when people thought there was NO WAY we could ever find a cure. Well, because people rallied and fought for funding, remember ACT UP?, AIDS research was funded aplenty. HIV-AIDS is a manageable disease today. It is NOT the death sentence it was in the 80s. Is it still awful? Yes! Is it still preventable? Yes! Is it a death sentence? No! AIDS activists insisted the disease STOP being treated like a "gay only" punishment, and instead drove home the message - fund this disease or deal with relentless, in-your-face-at-every-turn activists and demonstrators and challengers. They were heard, loud and clear.

Alzheimer's is viewed as an old person's disease, end of the road kind of bad luck. Well, it's not. The effects of Alzheimer's disease are OURS to deal with, the family and friends. We will suffer emotionally, physically and financially. This is NOT a requirement of aging, it is a disease. A biological process. A knowable intruder. A cure, treatment, prevention, CAN be found. It isn't some kind of unsolvable mystery that makes scientists fret and wring their hands. They can DO this. But here's the killer - funding for Alzheimer's disease is on the DECLINE. Alzheimer's victims have no voice. And the children of those victims - the yous and mes of the world - had better get our ACT UP together and make the point that this kind of funding is completely and totally unacceptable.

Where are the activists? Where are the leaders? Who is driving this bus and why isn't it going anywhere?

Patty

Gail Rae Hudson

I vaguely remember you mentioning something, earlier, about your attempted involvement in WRAP and your disqualification because your Dad was not absolutely diagnosed as having Alzheimer's. Am I remembering correctly? Since the definition of Alzheimer's continues to expand, is WRAP now including the adult children of, simply, those who suffer from dementia, regardless of what is assumed to be the cause?

Mona Johnson

Gail, I was "kicked out" of WRAP because cerebral amyloid angiopathy, rather than Alzheimer's, was Dad's primary diagnosis. As far as I know, WRAP is still focused on people whose parents had or have a diagnosis of Alzheimer's. I'll continue to talk with them periodically to get an update on that.

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