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Good Mo...ning In a message dated 10/26/98 9:43:58 PM Central Standard Time, [log in to unmask] writes: << The conference report language strengthens the other report language by stating that "Consistent with the enactment of the (Udall) Act, NIH is EXPECTED to utilize resources for research focused on Parkinson's disease..." When Congress says "NIH is expected" to fund additional Parkinson's research, it is much stronger than merely encouraging that research be funded. Furthermore, the additional language includes a definition of what Congress understands Parkinson's-focused research to be: "where the principal focus of the research is the cause, pathogenesis, and/or potential therapies or treatment for Parkinson's disease." This language is specifically included to address the documented NIH practice of including research totally unrelated to Parkinson's as part of their Parkinson's research portfolio. This is also a major step forward. The first sentence of the conference report language states: "The conference agreement supports the fiscal year 1999 funding level proposed in NIH budget documents for Parkinson's disease." This is a reference to NIH's published amount of $106 million for Parkinson's research in fiscal 1999. This sentence is an attempt to "lock in" that funding figure my having Congress acknowledge and accept it. The other sentences, discussed above, then attempt to ensure that ALL of that $106 million will be spent on Parkinson's-focused research, as defined. So does this mean $106 million will be spent on Parkinson's-focused research in 1999? Probably not. Despite this improved language, and our successes in raising Congressional awareness of Parkinson's, the NIH will likely continue is practice of including lots of so-called "related" research in its Parkinson's program. It is our responsibility to continue to monitor the situation and continue to work with our supporters in Congress to require NIH to fulfill both the letter and the spirit of the Udall Act. To help us reach that end, five Senators participated in a colloquy - or a conversation included in the Congressional record - specifically detailing their concerns with NIH's current funding practices and stating Congressional intent to fully fund the Udall Act. >> So, can we finally say "We won?" It looks close enough to me. Furthermore, there is a friend of mine who has had researchers from the Mayo clinic go to their home and investigate a "stiff" family member of a PWP--looking for multi PWP kin. They said that they could do this because of "extra money that had recently become available." It appears to me that there is just enough left to do to keep us together and focused. What is left is to insure the NIH isn't able to thwart the intent of Congress. However, as I read things: WE WON, WE WON, WE WON, WHOOPEE!!! Ya gotta celebrate these things when they happen. They have been few and far between. Regards, WHH 55/19/24 (estimated lifetime years with PD)