 |
 |
I've been encouraging relatives and friends to write their senators and congressmen regarding Udall bill support. They often need help and I've generated the attached fact sheet to enclose with a personal note or letter. I've also attached a sample letter to be adapted. Modify and use as you wish. - - - - - - - - - - - - - - - -- - - - - Fact Sheet - - - --- - - - - - - - - - - - - - - - - - - - - - - - - - - - -- - S684 and HR1426 - The Morris K. Udall Parkinsons Research and Education Act Udall Bill - Provides $100M/year for Parkinson's Research for 5 years The Udall Bill authorizes $100 million for the National Institutes of Health to conduct Parkinsons Disease basic research, expanded clinical research, a coordinated national research agenda, establish 10 PD research centers, award research excellence, establish a databank of risk factors, and fund a national education program for training health care professionals. Why should Congress fund additional Parkinson's research? 1. Parkinsons has Wide Ranging and Devastating Effects. An estimated 1.5M Americans have Parkinsons Disease (PD), a chronic neuro-disorder that progressively attacks the body's ability to move. Although medications can be effective at masking symptoms in the early stages, over time medications become ineffective and the afflicted become incapacitated by tremor, stiffness, and similar paralyzing effects. Because PD does not shorten life span, Parkinsonians generally become wholly dependent for many years. The total physical, emotional, and financial drain is devastating for those diagnosed, caregivers, families, and friends (8-10M total affected). 2. High Probability Breakthrough. Neuroscientists uniformly agree that Parkinson's is the most easily cured neurological disorder because it affects very specific brain cells. Multiple advances have positioned Parkinsons for a major breakthrough. Many believe a cure is possible within five years, given proper funding. Moreover, conquering Parkinsons is considered to be stepping stone research to more complex neuro-pathologies such as Altzheimers and ALS. 3. High Leverage Investment. Currently, Americans spend $6B/year on PD medications and $25-50B/year for total care, support, and lost productivity. This figures at $4K-$8K/year per Parkinsonian. In this sense, the Udall legislation offers high leverage - spending $100M/yr for five years to save $25B/yr forever. Moreover, if the investment speeds progress in other nero-diseases, the Udall funding becomes doubly leveraged. 4. Critical Mass Research Funding. Parkinsons research funding has been overlooked. At present, government funded PD research is at the level of $30/yr per Parkinsonian, compared to over $300/yr per multiple sclerosis patient, $295/yr per cancer victim, and $1,069/yr per AIDS patient. The Udall bill restores a measure of funding equity and establishes a research program commensurate to the opportunity for breakthrough. - - - - -- - -- - -- - - - - - - -- -- - - - Sample Letter = =- - - - - - - - - - - - - -- - -- - -- - - - June 10, 1996 The Honorable XYZ United States Senate or Congress Washington, DC 20510 Re: S684 and HR1426 The Morris K. Udall Parkinson's Research & Education Act Dear XYZ I would appreciate knowing your position on this important health bill which currently has over 200 House and Senate co-sponsors. More and more young people are being diagnosed with Parkinsons - a progressive neurological disorder that controls motor functions. Two members of my family have been diagnosed and have joined the 1.5M afflicted and wider circle of 8-10M caregivers, families, and relatives who are also affected. What triggers PD is unknown, but today's treatments provide temporary relief and become less and less effective over time. The good news is that scientists and research physicians agree that Parkinsons is poised for a major breakthrough. Of course, progress is also controlled by funding, which is exactly what the Udall bill provides. I have attached a summary of four reasons for an upgrade in government support to PD research along with its long-term economic and human benefits. I should also point out that PD research funding is high leverage because breakthroughs will apply to Altzheimers, ALS, and other neuro-disorders. It also appears that the PD research funding level is presently far less than for many other diseases. I feel strongly about the Udall bill. I am asking you to become a co-sponsor for it and to support its passage. In case you do not share these feelings, I would welcome the opportunity to respond to any concerns you have. Thank you for your attention to this important matter. Name Address