 |
 |
Absolutely incredible! That's the only way I can describe the day long meeting we had with a cross-section of directors of the National Institutes of Health (NIH). They were interested, attentive, innovative, sympathetic, and above all, committed to helping cure Parkinson's NOW. I believe we have embarked upon a partnership with NIH, and NINDS in particular, that will cure Parkinson's. That has always been our dream and words cannot adequately describe the emotions I felt as I actually witnessed the pieces of the foundation put in place. It appears to be a real solid foundation. I was choked up all morning. We have battled so long and so hard. We have accomplished what was thought to be impossible -passing the Morris K. Udall bill, only to find out that effort was insufficient to turn the money spigot on. And far too often, we found ourselves portrayed as adversaries with NIH because of the ear marking issue. I stated earlier this year that it was time to be partners with NIH in curing this sinister disease. Never did I dream we would ever attain the atmosphere of commitment and cooperation that we saw on Wednesday. At the request of Sen. Wellstone and his staff, Nina Rossomando and John Gilman, a group of the advocate representatives met Tuesday evening. Present were Jeff Martin, Perry Cohen, Michael Claeys, Larry Hoffheimer, Carol Walton, Ken Aidekman, Mort Kondracke. Sen. Wellstone noted that we had unprecedented momentum in the House and Senate. It was time to present a unified agenda to NIH. We were able to achieve that. Several items high on our list were: continued and meaningful involvement of advocates in the process; a plan that when implemented would achieve the goal (not an earmark) of $75 million in funding in FY 2000, a five-year plan that would continue to increase Parkinson's research funding as appropriate to achieve the potential advances in treatment noted by Congress and acknowledged recently by Dr. Fischbach, which include "solving" Parkinson's disease. Joel Gerstel, Robin Elliot, and Joan Samuelson joined us the next morning at NIH. From the outset it was apparent that Dr. Fischbach, Director of NINDS, who chaired the meeting, wanted a continued and meaningful involvement of the advocates. It was never a question of if, but rather how to optimize that involvement. In addition he wanted to see a cross Institute commitment to curing Parkinson's and towards that end he had invited Dr. James Battey, Director, NIDCD; Dr. Patricia Grady, Director, NINR; Dr. Richard Hodes, Director, NIA; Dr. Steven Hyman, Director, NIMH; Dr. Robert Nussbaum, Director Laboratory of Genetic Disease Research Branch, NHGRI; Dr. Kenneth Olden, Director, NIEHS; Dr. Judith Vaitukaitis, Director, NCRR. They each gave a presentation on their involvement with Parkinson's or potential future involvement. Then came another highlight the day. Jeff Martin, a relatively new player in the advocacy effort, summarized the position of the Parkinson's advocates. He was magnificent. He presented the points we had agreed on the previous evening. Jeff is 40, diagnosed about three years ago, an attorney in Washington, and vice president of Saks . He is well informed, articulate and relatively low-key. He appears to be assuming a leadership role with NIH with the consent of all the advocacy groups. Perhaps the time, personalities and position of the moon with respect to Venus, are all such that we can have a coordinated, cooperative effort with NIH. Joan Samuelson and others noted on several occasions that what we are asking for was entirely consistent with what Congress requested. Also, sufficient funding had been provided by the Appropriations Committee to enable the significant increases in Parkinson's disease research envisioned by the Udall Bill. A major portion of time was devoted to discussing the March 1st 2000 requirement by Congress for a five-year plan and necessary steering committees, focus groups, and resources this would require its. The significant role to play by the 11 Udall centers was also discuss at length. Concluding the day was a very informative discussion regarding budgeting and the processing of grant application to NIH. It is a complex and well thought out process. It is also a lengthy and rigorous process. I got the distinct impression that at least currently all Parkinson's related grant applications, judged to have scientific merit by the peer review process, are being funded. We do not have a pool of high-quality research proposals. This makes programs such as the seed money program currently promoted by the Parkinson's Alliance not only timely but urgent. All in all, I'm just ecstatic.