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>Last week, members of the Executive Committee from the newly formed >Parkinson Alliance were privileged to attend the American Academy of >Neurology's Annual Meeting, held in Minneapolis, Minn. The Academy is the >nation's leading neurological professional society. They meet annually to >discuss, among other things, promising research breakthroughs and emerging >treatments. > >In attendance representing the Alliance were its president, Jim Cordy, >Carol Walton, Margaret Tuchman, Bob Dolezal, Dale Severance and NPF >Washington Counsel, Larry Hoffheimer. > >Recognizing the need to gain support from the scientific community for >funding of the Udall Act, the Alliance took advantage of this incredible >opportunity, and solicited signatures from the hundreds of neurologists >present on a letter which is attached below. > > >The Honorable Arlen Specter >United States Senate >Washington, DC 20510 > >Dear Mr. Chairman: > >We, the undersigned, seek your support for a substantially increased >investment in federal research dollars focussed on Parkinson's disease >(PD) in this year's FY 1999 Appropriations measure. As members of the >nation's leading neurological professional society, we have met this week >for the American Academy of Neurology's Annual Meeting in Minneapolis, >Minnesota to discuss our field's most promising research opportunities and >emerging treatments. It is our feeling that with the rapid acceleration >in genetic techniques, molecular chemistry and epidemiological inquiry, an >increased federal investment would allow us to take advantage of these >recent developments and discover more about the cause of, and how to more >effectively treat, this degenerative disorder. > >It is our feeling that the relatively conservative rate of increase in >'direct' funds that PD research has received over the last several years >is disproportionate to the amount of meritorious and promising research >potential in this area. Without these additional funds, worthy research >proposals continue to go unexplored. > >As our country's population continues to age, many more than the one >million Americans who currently suffer from Parkinson's will be diagnosed. > We need to know more about how to effectively treat, prevent or even cure >Parkinson's, and other age-related disorders, before this demographic >nightmare places any further strain on our nation's economy. The time to >act is now! > >We urge you in your deliberations of funding levels for the National >Institutes of Health for FY 1999, to add your strong voice to efforts to >substantially increase the federal investment in 'direct' PD research. We >look forward to receiving your reply. > > >Cc: President William Jefferson Clinton >Speaker of the House Newt Gingrich >House Labor HHS Appropriations Subcommittee Chairman John E. Porter > >I am pleased to announce that more than 500 neurologists signed in support >of this letter!!!!!! > >Personalized copies of this letter were sent to the President, Speaker of >the House, and both Chairmen of Labor, HHS Appropriations Subcommittees. >A personal letter from Jim Cordy, on Parkinson Alliance letterhead, >accompanied each one. Each letter from Jim was individually tailored to >it's recipient, but to give you an idea of what it basically said, I will >attach the one sent to House Chairman John Porter. > >The Honorable John E. Porter >U.S. House of Representatives >Washington, DC 20515 > >Dear Mr. Chairman: > >My name is Jim Cordy. I serve as President of the Parkinson Alliance. I >appeared before your Labor HHS Appropriations Subcommittee on February 4, >1998 to testify on behalf of the Alliance and the National Parkinson >Foundation advocating full appropriations for the authorized funding >levels passed in the Udall Act. You may remember my testimony by my >visual aid, a homemade hourglass, that was intended to both keep my >remarks limited to the allotted five minutes, and to help illustrate how >time for the one million Americans with Parkinson's disease (PD) is not >neutral. I would like to thank you and your staff once again for the >opportunity to testify. > >Since we met, I have given a lot of thought to your stance against disease >specific earmarking of research funds. You indicated that to avoid >political meddling in a scientific decision-making process, Congress had >an obligation to listen to the experts. After all, the scientists at NIH >are the ones who can best determine where NIH's resources should be >directed. > >This gets me to the point of my letter to you today. > >A delegation from the Parkinson Alliance was invited to attend this year's >American Academy of Neurology Annual Meeting (AAN), held this year in >Minneapolis, Minnesota. The AAN is the nation's leading neurological >professional society, and its members are some of the top neurologists in >the world. They gather once a year to discuss their field's most >promising research opportunities and emerging treatments. > >During the course of the week long meeting, members of the Parkinson >Alliance talked with the neurologists about the current status of the >Udall Act and the relatively low rates of increase that 'direct' or >"focussed" PD research has received in years past from NIH. They were, >then, asked to sign the attached letter supporting "Oa substantially >increased investment in federal research dollars focussed on Parkinson's >diseaseO" as authorized by the Udall Act. Copies of this letter have also >been sent to the President, House Speaker Newt Gingrich, and your Senate >counterpart, Chairman Arlen Specter. > >It is my hope that this showing of scientific support for funding of this >measure by experts on research potential in the field of neurology, will >go a long way to convincing you, as well as the nation's other key >decision makers, that the Udall Act is not just the culmination of four >years of effective grassroots advocacy by a noisy patient group. There is >recognized scientific support and need for these funds, and every day that >passes without them being appropriated is like another grain of sand >passing through OUR hourglass. > >Mr. Chairman, members of the nation's leading neurological professional >society, and the Parkinson Alliance, ask that you please do all that you >can to ensure that funding for the Udall Act is included in this year's FY >'99 Appropriations measure. I would request that the reply to the >neurologists' letter be sent to the Alliance's Washington, DC address so >that I may send copies to each of them. > >Thank you for you attention to this matter and for the opportunity to >testify before your Subcommittee. It was an honor to meet you. > >Sincerely, > > > >James T. Cordy >President > > > >Each letter, accompanied by the letter from the neurologists, and copies >of their signatures, will arrive in their respective offices in the next >few days. > >Remember, time is of the essence if we are to succeed in gaining funding >for the Udall Act. Latest word is that Congress will conclude their >deliberations on FY'99 funding priorities by mid to late June. The time >to act is now. If you have any questions on what you can do to help, >please send me an e-mail or call 1-888-331-4673.