 |
 |
In a message dated 7/16/99 10:40:08 PM Central Daylight Time, [log in to unmask] writes: << In 1997, after four years of advocacy efforts, the Morris K. Udall Parkinson's Research Act was signed into law authorizing the National Institutes of Health (NIH) to fund up to $100 million in "research focused on Parkinson's disease." As of this date, the Act has not been funded and much of the research has not been >> Dear Senator BIGWHEEL, July 17, 1999 Thank you for having your legislative assistant (Ms. xyz) meet with us on June 30. I spent most of my time demonstrating (via videotape) my disability, and proving (via my picture-containing prospectus) what I had lost to 20 years of symptomatic Parkinson's Disease (PD). We didn't spend much time on the most important points --the "so what." I will attempt to rectify that situation now. That week, our research experts called Parkinson's the "most curable neurological disorder" and told us of several projects that are very close to a cure. Time is not neutral for people with Parkinson's - the disease is progressive, chronic, and relentless - and we can't afford to wait any longer. The details of a cure are of secondary importance to us, WHEN it is accomplished is not. Last year, Congress provided the NIH enough new FY 99 money to do more of everything. Incredibly, once again most of the 100,000,000.00 annual dollars specified in the Udall Act was not spent on PD. I have become convinced that Federal money does drive research! To paraphrase a St. Louis researcher "Persons wanting to do research, find and submit proposals based on the availability of funds. Federal funds for PD are tight right now." The financial incentive to spend (invest) this money is overwhelming. It seems logical to do so as soon as possible. PD costs society (a generous part of this is federal money) from 5 to 25 billion dollars a year (13.6 to 68.5 million a day). Saving the (extremely low end estimate) 13 million dollars a day would pay a whole year's investment back in 7.3 days in a PD free America. A more reasonable 68 million a day would pay it back in less than two. Much is made of avoiding politicians making scientific decisions. In our society, elected representatives, not scientists, decide priorities. Spending to fund a cure for PD is a question of priorities. A specific to do: Please contact Representatives Carolyn Maloney and/or Fred Upton. Then cooperate with the Congressional Working Group on Parkinson's Disease. Thought I'd share. If you wish, please plagiarize Regards, WHH 55/38/37