On route to the cure:
FACTS
* Parkinson's Advocacy has succeeded in increasing Federal research
budgets from under $50 mil per year when I was diagnosed in 1996
to more than 5 times that amount this year. Yet, no new
Parkinson's drugs have been approved for release in nearly 6
years, other than an existing drug combination. DBS is the only
new treatment.
* Many scientists believe we have enough knowledge now to vastly
improve treatment, and indeed there is a new emphasis at the NIH
(National Institutes of Health) on "translational" research and is
gearing up for clinical trials on neuroprotection. But NIH and
the government are not the ones who manufacture drugs. Private
industry regulated by the FDA are the ones who will deliver these
new therapies.
* WHAT THE SCIENTISTS DIDN'T TELL US: 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 Parkinson Pipeline Project was started to do what we can do as PWP
to facilitate the introduction of new therapies. The project has grown
from our grassroots base on this forum and is gaining recognition and
resources in order to make a dent in those long time frames. 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 clinical phases.
We are affiliated with the Parkinson's Disease Foundation (PDF) who
emphasize therapeutics development to capitalize on their strengths in
clinical research and their close ties with the Parkinson Study Group
(the consortium of clinical researchers conducting many of the trials
for PD). We are also working with Cisco Learning Institute and Kinetics
Foundation to develop web technology to support the components of our
comprehensive program. We recently received word that the
Neuroprotection Clinical Trials Coordinating Center intends to fund our
PILOT test of the impact of patient counselors on retention and
protection of human research subjects.
YOU can be a participate in 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 and
The Parkinson Pipeline Project Members
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