>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.