Narcolepsy Network Advocates on Capitol Hill for Increased NIH Funding
WASHINGTON, DC, October 8, 2010 The Narcolepsy Network will bring a group of over 40 narcolepsy patient advocates to Capitol Hill on Friday October 8, in an effort to raise awareness about narcolepsy among congressional leaders.
Narcolepsy Network’s Patient Advocates will meet with their respective Members of Congress to share their experiences living with narcolepsy and to advocate for an increase in funding for narcolepsy research through the National Institutes of Health (NIH). Narcolepsy Network (NN) is a national patient support non-profit organization for people with narcolepsy, founded 25 years ago.
â€œNarcolepsy Network is proud to bring the voices of those living with narcolepsy to Capitol Hill,â€ says Patricia Higgins, RN, President of the Narcolepsy Network Board of Trustees. â€œThese brave patient advocates are a powerful voice for the need to increase NIH’s funding of narcolepsy research.â€
Narcolepsy, a neurological autoimmune disorder of the sleep/wake cycle, affects 1 in every 2,000 Americans. There is no known cure for narcolepsy and better solutions are needed as soon as possible. Even with the best treatments available, narcolepsy severely inhibits critical cognitive functioning and compromises education, employment, and personal lives. Studies indicate that narcolepsy’s affect upon quality of life is comparable to epilepsy and Parkinson’s disease.
Medical research efforts on narcolepsy have not kept pace with other chronic, debilitating disorders of comparable prevalence. Yet narcolepsy research will most likely have large, secondary public benefits as a greater understanding of narcolepsy is believed to be the key to unlocking the secrets of sleep and dreaming and may provide a basis for understanding autism, insomnia, schizophrenia, bipolar disorder, obesity and addiction. Such trans-disciplinary research is critical to NIH’s mission and success.
Narcolepsy Network’s Advocacy Day is taking place in conjunction with the 25th Annual Narcolepsy Network National Conference in Arlington, Virginia from October 8-10. This year’s conference, â€œNN in 2010 – Decade of Hope,â€ brings together a unique gathering of internationally-renowned narcolepsy researchers with the patient community.
For more information, please contact: Patricia Higgins, RN, President of Narcolepsy Network Board of Trustees, at 609-332-0774 or [email protected].
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Date Created: October 6th, 2010
Last Updated: October 6th, 2010