Marjorie L. Moorefield wrote:
>Since there isn't a registry of how many people contact PD each day or
>year, >in what States, their race , age , occupation, etc.,
>then the only thing we can study is death.
Marjorie,
Your posting reminded me about list messages this past spring about a Web
based PD registry under development. It was to be a joint project of
NINDS, Parkinson's organizations and academic researchers. The URL given
at that time was : Parkinsonsregistry.org. I had bookmarked it and just
tried it again, but it is still be unavailable. I wonder the registry is
still in the works. It could help provide valuable information on the
causes of PD. DOes anyone know the status of this project? Is it a
funding problem?
Also wanted to mention that the Department of Defense's Neurotoxin
Exposure Treatment Research Program is conducting research on the
mechanisms and treatments of neurodegenerative diseases -- specifically
on PD, and on the influence of environmental toxins. Funding for this
research is from the Defense Dept. and is separarte from the NIH funding
for PD research. They are requesting increased funding ($50 million) for
FY 2001 to continue and expand the research.
At the Michael J. Fox Forum in June, a number of DOD funded
researchers gave excellent presentations. I'm trying to read my
illegible notes --- they are investigating areas such as gene therapy to
restore nerve cell functioning, immunophilin therapy to prevent cell
death, neurotoxicity of insecticides, and long term effects of neurotoxin
exposure on veterans, especially Gulf War vets - many of whom are
suffering from neurological problems such as tremor, muscle weakness,
etc. They reported that one of their studies showed that exposure to one
type of pesticide did affect dopamine uptake in the brain, and are now
investigating the effects of exposure to multiple pesticides. Aslo
stated that an annual summary of the project is forthcoming.
What we can do? -- Contact your Representatives and Senators to
coontinue and increase funding for the Department of Defense's NETRP
research. There should be more info. on the PAN or MJF Foundation web
sites.
Linda Herman
