I
Larry Hoffheimmer, attorney for the National Parkinson Foundation, has asked
me to post the following news release
T'S ALL ABOUT RESEARCH
Several years ago the Parkinson community recognized the inequity in
federally supported Parkinson's research funding. That recognition
resulted in the introduction of the Udall Bill..........and as a result
one of history's most concerted and focused grass roots lobbying efforts,
the Udall Bill was enacted into law last year.
Because the Udall Bill was authorizing legislation, the unfinished
business of obtaining appropriations for the $100 million of Parkinson's
research funding, need to be completed.
Once again the Parkinson's community rallied. Congressional visits,
phone calls, and letters by the thousands were written. Activists
appeared before several Congressional committees, including the most
recognized human on earth, Muhammad Ali. And finally, Jim Cordy
established a relationship with Senator Specter and his staff which
included a TV spot for Senator Specter's reelection repeating the
Senator's pledge to Jim that he "would pull out all stops to cure
Parkinson's disease." This relationship helped not only in the current
appropriation process, but the Senator's pledge of his full support in
helping assure that NIH would spend the money properly.
The final result was an appropriation bill to fund the National
Institutes of Health for fiscal year 1999 by an amount that included a $2
billion increase over fiscal year 1998. The appropriations measure, which
was signed into law by President Clinton in October, recognized that
there was sufficient funding allocated to fund the authorization levels
set forth in the Udall Act........$100 million.
Because the National Institutes of Health funds research primarily from
scientifically peer reviewed applications, the Parkinson community, whose
dedication and focus was inspired by their desire to "fund the research
to find the cure," a group of leading activists assembled in Miami to
chart their next mission. Their goal was to obtain, annually, $100
million of research focused on Parkinson's disease from the National
Institutes of Health. They concluded that the best way to accomplish that
goal was to encourage more medical researchers to develop innovative NIH
grant applications, and, to this end set out to raise funds to support
innovative Parkinson's grant applications.
They recognized that the National Parkinson Foundation had assembled a
very prestigious scientific advisory board that peer reviewed all grant
applications, including more than 50 NPF Parkinson Centers of Excellence.
Accordingly, this group of activists, known as the Parkinson Alliance,
met in Miami at the National Parkinson Foundation headquarters on October
29 and 30, 1998. They agreed to affiliate with the National Parkinson
Foundation in accomplishing the final step in their mission to cure
Parkinson's disease. The National Parkinson Foundation has issued the
following announcement that summarizes this relationship and effort.
The National Parkinson Foundation, Inc., headquartered in Miami, Florida,
is pleased to announce the affiliation with the Parkinson Alliance, which
will serve as its grass roots fundraising and advocacy arm. The Alliance
consists of many of the activists who lobbied successfully for the
enactment of the Udall Bill.
The Alliance will have as its principal responsibilities the following:
Raise funds to support medical research that will lead to the cure
and improved therapies for Parkinson's disease
Create a national network of Parkinson's activists who will work to
accomplish these goals.
Identify regional coordinators who will work with the Alliance and
support groups in pursuit of these goals
Assist in the development of a national public policy and patient
services agenda on behalf of the Parkinson's community
The Alliance will be working to expand its membership to include persons
who will work in their local communities to accomplish these goals.
Further information on the activities of the Parkinson Alliance will be
disseminated via email, newsletter, and the NPF Web site
www.parkinson.org.
The following persons will constitute the initial leadership committee of
the Parkinson Alliance and others will be added from time to time since
the committee is in formation:
Perry Cohen
Jim Cordy
Gerry Haines
Dr. Peter Morabito
Charlie Richards
Vernice Roberts
Dale Severance
Barbara Schirloff
Sol Segall
Margaret Tuchman
Carol Walton
Jim Warsaw
Terrie Whittling
Mary Yost
Gayle Zoller
