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(NOTE- The delay in posting this response to Ivan is because bschirloff was off line for 10 days. Mikes response was, as always, sent in a timely manner.) ----------------------------------------------------------------------- Please refer questions, comments or requests for information on the Community Action Team program to: Michael Claeys Community Outreach Coordinator (800) 850-4726 --------------------------------- From Mike Claeys- I would like to respond to portions of Ivan Suzman's post as there may be other's in the community with similar concerns. First of all, let's look at what we've accomplished. Passage of the Udall Act is an ENORMOUS accomplishment. Many Washington insiders, even those supportive of our cause, advised us it couldn't be done. Many of those same people have since described our successful lobbying strategy and campaign as "textbook." And that's no false praise. Secondly, remember what the Udall Act is: it an "authorization" bill. Despite our urgency, it was recognized that the only way to get a roughly 300% increase in Parkinson's research funding was to FIRST pass the authorization and then get the appropriation. I don't know how many people are familiar with the term "Unauthorized Appropriation," but as someone who worked in Congress for five years I can assure you, those are very bad words. Believe me, identifying legislation as an "Unauthorized Appropriation" is one of the surest and quickest ways to kill it--especially as the budget is being balanced and discretionary dollars are so scarce. The Udall Act was signed three months ago. Congress has been back in session for barely three weeks--and has been paralyzed by scandal-watching. The fiscal year 1999 appropriations process has barely begun, and it won't conclude until late October of this year. This is not the time for the community to unravel. There's plenty of time to influence the FY99 appropriations bills, but what we have to do now is rally together, get organized and stay focused on our goals. But more about what we have to do this year to impact the 1999 budget in a minute. Let's discuss what the government will be doing in 1998. Along with passing of the Udall Act, Congress also approved 7.1% increases in both the NIH and NINDS. For the NINDS, which distributes about 80% of the federal Parkinson's research funding, that 7.1% translates into an additional $51.4 million. Congress also included "report language," or instructions, noting this increase and asking the Institute to increase and expand its Parkinson's research effort. We don't yet know how much of that $51.4 million will go for Parkinson's, but some will, and the more we stay on top of Congress and the NIH, the better are chances are for getting more. Included the NIH's Office of the Director 1998 budget is a $22 million "neurodegenerative diseases initiative," and while we don't yet know the exact amount, a large percentage of that money will undoubtedly go for Parkinson's research as well. The NINDS has also recently issued a request for applications for Parkinson's research institutions who want to be designated "NINDS Parkinson's Disease Research Centers of Excellence." The NINDS will allocate up to $5 million in total costs to support Centers in 1998, and it is anticipated that this will include up to three Center grants (each up to $1 million), and some smaller grants. This program may go on for up to five years. This program is independent of moneys authorized or appropriated relative to the Udall Act. It is worth noting that in the past the NINDS has often come out against such centers, and complained about the mandatory establishment of center in the originals Udall bill. This change in policy did not occur by accident. NINDS is surely responding to Congress's increased interest in Parkinson's research, which of course resulted from the community's effective advocacy campaign. For 1998 there is also about $23 million in neurodegenerative disease research funding in the Department of Defense budget. Some of this money will go towards investigating the causes and effects of so-called "Gulf War Syndrome," but it is precisely written to have direct applications to Parkinson's disease as well. Whether it's studying the influence of environmental toxins on neuro cell death, or the mechanism of that cell death, or a variety of other important questions, this research will clearly have an impact on the fight to cure Parkinson's. There is also $10 million in the Department of Veterans Affairs budget specifically for Parkinson's research. There is also language instructing that all these various research efforts coordinate with each other and share their findings so that progress towards the cure for Parkinson's can proceed as rapidly as possible. That's not a bad year's work. And none of the things listed above happened by accident! The only way the got done was through the combined effort of the entire Parkinson's community. (And none of this is new information--it has all been published, some of it several times, in PAN's newsletters and Action Advisories.) Our community is not perfect, but it does us no good to focus on the negatives, when so many positive things have been accomplished despite our flaws. We're on a roll, people, let's keep it going! To prepare for the challenges of 1998--particularly the campaign to secure the full $100 million appropriation for fiscal year 1999--the PAN has put forth the Community Action Team concept, which basically is a "National Network of Support Groups" like Ivan suggested. It's a program to provide every active group with a common set of informational and advocacy materials, establish better lines of communication among those groups and the national advocacy leaders, develop new advocacy groups in areas currently lacking them (particularly the states and districts of Members of the Senate and House Labor/HHS Appropriations subcommittees) and empower all Parkinson's advocates with the tools and information to build the bridge between the research community and Congress, and make an even bigger impact in Washington than we did last year. So far the response has been great, and I we are in the office this weekend working on getting the materials together. It will be moving forward soon. The best things advocates can do now is get behind the program, organize in your local community, and then replicate your effective groups in areas that need them. This is one of the important topics discussed at a recent meeting with representatives from the Parkinson's Alliance group. Carol Walton, Bob Dolezal, Bob Martone and Margaret Tuchman met last week with Joan, PAN Board Chair David Rosenthal and myself. We had a frank and open discussion of the challenges facing community and some possible ways to address them. Parkinson's Alliance representatives have held similar meetings with the APDA, PDF and NPF. All agree that greater communication, cooperation and understanding will result. With the help of the Parkinson's Alliance members, a meeting has been scheduled later this month in Washington, DC for representative from these national groups to get together and coordinate this year's legislative strategy for securing the $100 million appropriation for fiscal year 1999. Finally, I'd like to say that Ivan's comments about Joan and Jim Cordy are particularly ill-timed. Just ten days ago, they both delivered stirring testimony before the important House Appropriations Labor/HHS Subcommittee. They coordinated their testimony ahead of time, and both made strong impressions on Chairman John Porter, one of the most important figures in Washington in the field of medical research funding. Jim effectively conveyed our communities sense of urgency through his words and his homemade hourglass, and Joan got Porter to agree on the record to visit Parkinson's scientists and research facilities in his Chicago area district. Well done. We understand the frustration people feel over the perceived lack of cooperation among the various national organizations. In fact, given the size of our staff and annual budget, and the understanding of what could be accomplished with a truly integrated, aggressive lobbying operation, we share everyone's frustration--big time! But none of us can let frustration lead to inaction. We've all worked to hard and come to far to let fears or frustration derail our efforts--especially when things have really never been better. Our opportunities will NOT SLIP AWAY for the very simply reason that WE WON'T LET THEM--none of us. Let us not follow the example of Washington and become paralyzed from preoccupation with scandal, intrigue or process. Let us remind Washington what's really important--that our country can only realize its potential if its citizens are free and healthy enough to realize theirs. Recognizing what's been accomplished and what work remains will keep us all focused and positive, and will get the job done. Please refer questions, comments or requests for information on the Community Action Team program to: Michael Claeys Community Outreach Coordinator (800) 850-4726