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Hi listmembers, Please re-read Perry's message about the Parkinson Pipeline Project again and consider volunteering for it. I've been working with this great bunch of folks for about 2 years now, and we have seen the project grow and evolve and gather support along the way. But we need more people from the Parkinson's community to get involved and make it a reality. This is your chance to make your voice heard and to help speed the process of new treatments through the pipeline. It's a chance to apply your knowledge and skills - whatever time you can contribute will be appreciated. Visit the pipeline web site www.pdpipeline.org - although it's currently under revision, you can learn alot about the project and the different tasks that need volunteers. If you have any questions, you can contact me, or any of the pipeline members . Thanks, Linda Herman On Tue, 11 Nov 2003 10:43:42 -0500 Perry Cohen <[log in to unmask]> writes: > 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 > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn