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Dear Editor,
How can it be that a year has passed since Mom died?
After a two-decades long descent into dementia, dependence, and debilitation, Dorothy is free from Alzheimer’s, but her survivors are not. Alzheimer’s continues to devastate us, infecting our every memory of this beautiful, beloved person.
As if this long, slow goodbye were not awful enough, the disease’s after effects are nth degree atrocious. When Mom died on Jan. 26, 2011, part of me was grateful her suffering was over; the other part had no idea then how ours would continue.
I have since vowed I will do what I can to help others avoid the physical, financial, and psychological trauma that is Alzheimer’s.
How?
Two words: aggressive advocacy.
A year ago on Jan. 4, Alzheimer’s activists were instrumental in moving a bitterly divided, bipartisan Congress to unanimously pass the National Alzheimer’s Project Act (NAPA). More than 50,000 emails, nearly 10,000 phone calls, and 1,000-plus meetings led legislators to agree the only way to overcome the escalating Alzheimer’s crisis is to create a coordinated national plan of action.
A draft of said strategy awaits your input at www.napa.alz.org.
While online there, please contact Representative Cory Gardner, and Senators Michael Bennet and Mark Udall, and let them know they mustn’t allow either the Alzheimer’s Breakthrough Act or the HOPE for Alzheimer’s Act to languish for another session. Their immediate co-sponsorship and our collective voices will make a difference in 2012.
The millions living and dying with Alzheimer’s can’t wait for another anniversary to pass.
Brenda Rader Mross, Ambassador
Alzheimer’s Association Northern Colorado Chapter
In April of 2009, the Blanchette Rockefeller Neurological Institute (BRNI) was granted permission by the FDA to begin a clincal trial to test the effectiveness of a medicine called "Bryostatin-1" in treating Alzheimer's Disease (Clinicaltrials.gov# NCT00606164). BRNI had determined that Bryostatin-1 was effective in treating AD in animal studies. They produced a video called "Groundbreaking Alzheimer's Disease research at the Blanchette Rockefeller Neurosciences Institute" describing how Bryostatin-1 works ( http://www.youtube.com/watch?v=aU-DUJ38Z9o) that was uploaded by WVPublicBroadcasting on July 9, 2009. If you watch this video, it seems like Bryostatin-1 will be effective in treating alzheimer's disease.
It is now two and a half years later and this clinical trial has yet to be started. I've contacted BRNI on numerous occasions and am always told that they are waiting for funding. During that period of time, BRNI has received some large donations (they have constructed new facilities). I don't know why some of the money received thru donations hasn't been used to finance this clinical trial. There are more than five million people in the United States alone with Alzheimer's disease whose condition has deteriorated over the past two and a half years.
As an alzheimer's care giver, it is my opinion that the researchers at BRNI should be less concerned about self promotion and more concerned about getting effective treatment to alzheimer's patients. At a time when we're being told that a cure could be found for alzheimer's disease if only we had more people volunteering for clinical trials, BRNI is setting a poor example.