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Hi folks:

I am a newbie and a family support member for our daughter, Karen Bardo.
The volume of the list is large , but the humor, information and
companionship makes it worthwhile. My delete feature is efficient and my
printer has worked overtime for the information I want to preserve.

From my two weeks on the list and talking with Karen, Ivan and Gregg, I
suggest that the top priorities of the PD community , after the daily
dealings with PD, might be:

 1. Lobbying Congress to fund the Udall Act.
 2. Working for more recognition locally on PD and raising funds to help
those with PD and their caregivers in need.

Congress promised $ 100 million in research last year and they should now
fund it. I have read that most of us have up to 1500 relationships. We
should ask our friends
and family to contact their three members of Congress. It is technical and
we need to give them draft letters. I foung the information from Mike
Claeys, published on the list on April 9 and 10 under Heit Bill and
BSCHIRloff, very helpful. Apparently, Congress doesn't usually tell NIH how
to allocate research dollars among diseases but they CAN do that to carry
out their promise in 1997.

There is a difference between direct research funding and related research.
PD has had the lowest % of direct research and you should ask for $100
million in direct research funding. Congress only has about 40 days of
session left this year so this is an urgent priority.

The local effort can proceed along the line that Gregg Leeman is working on
here in Maine.