Dear Mr. Essner:
I am sure that you will receive much agreement from all persons affected by this disease of Dr. Alzheimer.
My conjecture is that in order to defeat this disease science needs to stop trying to meet the monetary needs of the pharmaceutical companies and get back to dealing with the people affected.
For example, I have Early On-Set Alzheimer's Disease, (EOAD). I am told it is a rare type of AD, a genetic anomaly. But it is Alzheimer's no less, and not any different than that experienced by a person who is age 69 or 98. But researchers decline to use me as a research subject because I am too young. I am 52, and other than my brain going into uncharted territory, I am healthy. But most researchers dealing with new medications don't want to use me as volunteer lab 'rat'.
On top of that, I am Early Stage, which means I have not achieved a significant amount of brain dysfunction to interest researchers. However, I go to my doctors, specialists in Alzheimer's disease, and ask them about events that I feel physically in my brain - events that put me on the couch for 8 hours at a time. And, as I have discovered, [these events] are precursors to new brain malfunction and memory degeneration.
I am told that it is not part of the known symptomology of AD. Then when I ask, "What are the earliest symptoms of the disease," I am told, "We don't know."
No one knows when this disease starts! How can you cure a thing that you can not determine its first beginnings? Why aren't researchers falling all over themselves to contact persons like me? We are the closest to the beginning of onset! I have the family history, the genetic knowledge and the disease has begun - my 95% chance is now 100% with this disease.
But no one wants me as a research 'rat' because, "I am not the right age!" I am documenting my symptoms, and asking why things are happening to my body and brain as they happen. As my degeneration continues, I will eventually be unable to talk to you about my symptoms. I will be unable to have the words to describe how I feel internally. And you will have missed out on an opportunity for measuring a great social and medical opportunity, maybe as big as Dr. Alzheimer's discovery.
That opportunity to learn about Early Stage is slipping away from you, day by day, as we EOAD's slide the steep slope to our oblivious death. Too bad! You could have learned so much from us.
Chuck Jackson