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Parkinson's Advocacy has succeeded in increasing Federal budgets for
scientific research from under $50 million per year (prior to the Udall
Act which passed late in 1997) to more than 5 times that amount after
NIH (National Institutes of Health) completed its 5-year doubling last
year. Yet, no new Parkinson's drugs were approved for release in the 6+
years, other than an existing drug combination and a treatment that has
been available abroad for several years. DBS has been the only new
treatment until very recently.

Although many scientists believe we have enough knowledge now to vastly
improve treatment, academic scientists, funded by NIH and elsewhere, are
not the ones who create, evaluate, manufacture and distribute new
therapies. This is the job of private industry regulated by the FDA.
WHAT THE SCIENTISTS DIDN'T TELL US is the average time from a scientific
treatment discovery to a new product on the market available to patients
is 14.2 years (and longer for neurology.)

The aim of the Parkinson Pipeline Project is to do what we can as PWP to
facilitate the introduction of new therapies. Initially conceived in
2001, The project has grown from our grassroots base on this forum and
has gained recognition and resources necessary to make a dent in those
long time frames. We have become the grassroots component of the
Advancing Parkinson's therapies (APT) program, a consortium of all
national level Parkinson's organizations led by PDF (Parkinson's Disease
Foundation.) The project has been a harbinger of the major new emphasis
by the Director of the NIH called the "roadmap" which focuses on
"translational" research from basic science into new therapies, and the
"critical path initiative" of the FDA commissioner to facilitate the
evaluation and approval of new therapies.

We presently have more than 20 volunteers working on compilation of a
database of new therapies and diagnostics in the pipeline, which now
stands at more than 3 dozen trials in various clinical phases. We have
established relationships with a half-dozen and growing number of
Pharmaceutical and Bio-Tech firms will PD treatments in the pipeline as
well as the FDA (with the goal of advising them on the patient
perspective on the disease, the treatments, and the regulatory process.)
We are collaborating with Johns-Hopkins Medical School on a grant to be
funded by NIH to evaluate the impact of PWP advocates in clinical
settings on retention of research subjects in long-term clinical trials.

YOU can be a part of this exciting project. In addition to helping speed
the cure to the PWP, many of us feel our participation is therapeutic in
itself. We are currently in need of additional trackers and educators to
help identify and synthesize information in the database on new
treatments. We also need additional PWP to serve as advisors on the
patient's perspective to the FDA and the sponsors of new therapies
undergoing evaluation and, starting soon, we will have counselors for
PWP in trials (on-site and telephone). JOIN OUR FIGHT. Sign up as a
volunteer today by filling out the forms in the "Help Wanted Section" of
the link below:

http://www.pdpipeline.org/helpwanted.asp

Perry Cohen Ph.D. and
The Parkinson Pipeline Project Members

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