 |
 |
I attended my 9th consecutive annual PD policy forum this week (In 2001 PAN did not hold a forum but over 2 dozen people came anyhow, so Sid Levin organized housing and logistics and I orgnized a program, including talks by all Federal PD Programs and a visit to NIH labs). For me these are wonderful occassions to meet with old friends and new ones, to learn about the latest science, as well as to meet your represenatives (if you have them) in Congress. This year was no exception. Discussions were lively and newcomers as well as old-timers came away satisfied and exhausted. Noteable among the events were: 1. The increasing emphasis on new Therapeutics development and clinical trials, which have been the emphasis of my work with PDF for the past 3+ years 2. Strong interest demonstrated by the new Director of NINDS who spent the entire day Sunday in the audience to learn with the rest of us. 3. Since I do not have voting representatives in Congress to visit Tuesday, I was particularly pleased to be invited by Dr. Anne Young, Chair of Neurology at Mass. General Hospital and President of the 34,000 member Society for Neuroscience to testify before the Labor-HHS Sub committee of the House Appropriations Committee. Perry http://appropriations.house.gov/index.cfm?FuseAction=PressReleases.Detail&PressRelease_id=361&Month=3&Year=2004 My prepared testimony read as follows DR COHEN: Thank you, Dr. Young. Mr. Chairman, I am Perry Cohen and I have been asked by the Society for Neuroscience to speak to you today about Parkinson's disease. I was diagnosed with Parkinson's disease in 1996 and have been fighting the disease as an advocate and a patient ever since. Today over 200 of my colleagues from all over the country, are on the hill to talk to our representatives about how the Federal government can help us rid ourselves of this unwelcomed companion who intrudes into our lives every hour of every day and as time goes on is increasingly intrusive, stealing more and more of our energy, our psyche, and our ability to function normally. For each one of us there are thousands of others, many disabled, who cannot be here. Time is not neutral for someone with a degenerative disease. A sustained effort is needed, and the NIH is integral to the success of that effort. However, I am not here to advocate for PD research; I am here to urge the Congress to follow through on what it started. The doubling of the research budget of NIH has now begun to produce many new insights into the fundamental processes of PD and many other conditions, and we are poised for dramatic improvements in treatment if only we apply this knowledge. Now is not the time to let up on the gas pedal when we are so close to results. After 8 years with continual deterioration of my PD I tell people I can see the dark at the end of the tunnel. To me that means long term custodial care, where I become a burden on my family and the community. I am on the leading edge of the 'baby boom.' As a nation we face an enormous burden from these long term care costs if we do not soon solve some debilitating diseases that increase with age, like PD. I can also see the light in the tunnel, thanks to Scientists like Dr. Young and colleagues who depend on funds from the NIH to conduct the basic research on the fundamental cellular processes and identification of promising targets for new therapies. We have not yet fully realized the benefits of the build up of our scientific enterprise. NIH is orienting its research activity rightly toward clinical applications of science and working with the FDA, private foundations and industry to create new drugs or devices to help patients. Thus, your investment in NIH not only holds promise for me and my cohort to avoid being a drain on the economy, but it also helps provide for the future of our country in a global economy as the basis of a vibrant biotech industry. Thank you . ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn