Sample Edit Board Memo To: Editorial Page Editors and Writers From: Name, telephone number Subject: Increased Funding for Parkinson's Research Date: August XX, 1999 For many lethal and disabling disorders, the scientific potential to revolutionize treatment and find preventative tools is well within reach. The U.S. is in the midst of a boom in biomedical research with incredible advances being made in genetics, high tech tools and treatments. To keep up with these discoveries and build on the incredible advances made, we must continue to fund federal medical research at adequate levels. In 1997 the Congress overwhelmingly adopted the Morris K. Udall Parkinson's Disease Research Act, historic legislation that authorized the National Institutes of Health (NIH) to devote up to $100 million per year for Parkinson's-focused research. To date that funding has not been appropriated — despite promising research and a compelling national need. Moreover, the NIH continues its disturbing practice of reporting to Congress funding totals for Parkinson's that include a significant amount of research — more than half! — that is not truly focused on Parkinson's disease as required by the Udall Act. Consistent, focused research efforts have yielded great progress for diseases like cancer, breast cancer and AIDS. During this decade, these diseases have all seen more than 98% of their total NIH research funding go for direct research. To realize a cure, Parkinson's needs and deserves the same proportion of direct research that NIH has devoted to other serious diseases. Parkinson's disease advocates are urging Congress to act this year to follow through on the promise of the Udall Act by adding to basic Parkinson's disease research the NIH is already conducting, specifically funding increases of $50 million for the National Institute of Neurological Disorders and Stroke and $25 million for the National Institute of Environment Health Science in the fiscal year 2000 Labor/HHS Appropriations bill. To provide the resources for these much needed increases, Congress must support efforts to keep the NIH budget on track to double over five years. Time is not neutral for people with Parkinson's — the disease is progressive, chronic and absolutely relentless — and people living with Parkinson's can't afford to wait any longer. Researchers are tantalizingly close to the cure, but finding it in time for those currently suffering requires the additional funding authorized by the Udall Act. What is Parkinson's Disease? The symptoms of Parkinson's disease, or Parkinsonism (PD), result from the degeneration of nerve cells in the mid-brain, and the corresponding loss of the neurotransmitting chemical dopamine produced by those cells. Parkinson's destroys physical movement, coordination and speech, and ultimately leaves its victims incapable of caring for themselves. Parkinson's robs people of their lives and their ability to contribute fully to their family, community and country. Parkinson's does not discriminate — it afflicts people regardless of gender, race, background, behavior, lifestyle or geographic area. Despite the common perception that Parkinson's is an "old person's" disease, the average age of diagnosis is 57 years, with many diagnosed in their 30's and even 20's; yet due to the debilitating nature of the disease, the Parkinson's community has been largely invisible to the public and the government. There are one million Americans living with Parkinson's and its related disorders. 60,000 new cases are diagnosed each year — one every nine minutes. The annual costs (health care, disability, loss of productivity, long-term care, etc.) associated with Parkinson's total $25 billion — a cost that will only increase as the Baby Boom generation ages. Medications and currently available surgical therapies are also very expensive. Federal research funding will decrease the health care and disability costs associated with Parkinson's. For example: If the onset of Parkinson's were delayed by just 5 years, the U.S. would save millions of dollars. Just a 10% slowing of the disease progression will save the U.S. $327 million per year. (Dr. Kurlan, University of Rochester) Reducing the number of falls related to Parkinson's would reduce the $40,000 or more dollars spent for treatment and/or hospitalization. An estimated 38% of Parkinson's patients fall; 13% fall more than once a week. (Dr. Koller, University of Kansas) Tremendous research potential exists in several areas, including neuroprotective agents, improved stimulation devices, cell replacement, and bioengineering of cells. But this potential can only be translated into improved therapies, treatments and potential cures if there is adequate federal support for Parkinson's research. Conventional treatments revolve around pharmaceutical substitutes for dopamine (such as L-dopa) and drugs that temporarily enhance the cell's dopamine production. Such measures lose their effectiveness as more cells are lost — so a true Parkinson's cure requires finding ways of stopping cell degeneration, and replacing damaged cells with healthy, viable ones, or nurturing those cells back to life. Researchers are reporting promising results among patients using a new device designed to deliver an electrical signal deep inside the brain, much as a pacemaker does to the heart muscle. The "deep brain stimulator" has received preliminary FDA approval for continued trials. This may offer the benefits of pallidotomy — a surgical lesion that alleviates symptoms by short- circuiting the abnormal neuronal activity that results when the motor system is starved for dopamine — with greater flexibility, and without permanent damage to the neuronal pathway. Meanwhile, pharmaceutical companies have developed more effective "agonists" and "inhibitors" — drugs that increase the effectiveness of conventional L-dopa therapies, buying time for patients while a more enduring cure is researched. The Udall Act calls for $100 million in "research focused on Parkinson's disease" because focused research yields results. Parkinson's robs people of their lives and their potential. It is time for Congress to increase funding for Parkinson's-focused research so that no more Americans will have to suffer that fate. _________________________________________________________ Do You Yahoo!? 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