Hello

If only I were a nude mouse I wouldn't expect anyone to listen to what I had to say about my various afflictions. If only I were a nude mouse I wouldn't have to engage the symptoms of dementia, except when it came time for me to remember not to get shocked, or which lever to push to eat!

But I'm not a nude mouse! I'm a whole person!

with the demise of the most recent pill/promise/theory I'm pumped up about the disproportional attention being paid by the Alzheimer's Study group to psycho social research (newt Gingrich and Sandra Day O'Connor, et. al). There seems little to no interest in including a BIG chunk of ear marked money for psycho social research in the new "National Strategy."

Would you please offer your .02 cents worth of what the National Strategy for Congress should be/include/fund? And send it to be posted on
 public-comment@alzstudy    this is a link to their site -  group.org

There is a town hall meeting/webinare  on early on set sponsored by the Alzheimer's Research Forum. One of the committee members will be speaking. Think about coming - its July 9 2-3:30 register at www.alzforum.org

Thank you.

Richard

I don't mean to be a pest, nor a spammer, but this is a pregnant moment in the history of how the Federal Government decides how much and where and why it is going to throw lots more money at dementia in the (well intended, mistaken, and insensitive and inappropriate) belief that maybe someone on the public dole will find the cure. Or perhaps even better yet some one will discover and understand the process of dementia and every drug company in the world can benefit from it.....unfortunately in the mean time..............we're still here and there are going to more and more and more of us.

---------- Forwarded message ----------
From: Richard Taylor <richardtaylorphd@gmail.com>     
Date: Wed, Jul 2, 2008 at 2:06 PM
Subject: someone with dementia speaks up! are you listening?
To: public-comment@alzstudygroup.org


I have been living with the diagnosis of dementia, probably of the Alzheimer's type for seven years.

I am deeply saddened, but not shocked at how little input and attention has been paid to the 5+ million people currently  living with a diagnosis of dementia probably of the Alzheimer's type, and the 4+ million people living with a diagnosis of dementia probably of some other sort. You listen to and engage caregivers, you listen to and engage researchers (almost all of whom have some conflicted interest in supporting increasing dollars for research). You briefly listened and then ignored in favor of the other more notable panel members one person who has the disease!. No one(s) of your commissions live with the diagnosis.

Would you feel comfortable setting national priorities for dealing with blindness, aids, heart disease, etc. and rely almost exclusively on the testimony and involvement in the committee process of folks who have never experienced the disease, and not on those who have first hand experience with the disease? Are any of your staff members living with dementia?