Duchenne Muscular Dystrophy Advocates Take to the Hill
Parent Project Muscular Dystrophy Holds 13th Annual Advocacy Conference
WASHINGTON, Feb. 27, 2012 /PRNewswire-USNewswire/ – Nearly 80 parents, grandparents, and relatives of boys with the most common form of muscular dystrophy will be on Capitol Hill today and tomorrow urging Members of Congress to support critical research and patient care initiatives.
Advocates from 23 states are participating in the 13th annual advocacy event sponsored by Parent Project Muscular Dystrophy (PPMD), the largest Duchenne muscular dystrophy advocacy organization in the nation.
Thanks in large part to Congress’s commitment to Duchenne patient care and research initiatives over the past decade, the average life expectancy has increased by nearly 10 years, and nearly 20 potential therapies are in various stages of clinical testing. With no cure or disease-modifying treatments available today, PPMD will advocate for maintaining current levels of Duchenne research funding at the National Institutes of Health (NIH) and current funding levels for the muscular dystrophy program at the Centers for Disease Control and Prevention (CDC). Advocates will also be requesting continued support for a Duchenne initiative within the Department of Defense, as well as provisions to strengthen the Food and Drug Administration’s commitment to advancing therapies for rare diseases.
Longtime champions Sen. Roger Wicker (R-MS) and Rep. Doris Matsui (D-CA) will once again be leading the Duchenne sign-on letter, and Sen. Debbie Stabenow (D-MI) will be presented with PPMD’s 2012 Congressional Champion award on Tuesday, Feb. 28th.
Media interested in photos or other coverage of the conference should contact Will Nolan, Director of Communications for Parent Project Muscular Dystrophy at 201.944.9985.
About Parent Project Muscular Dystrophy
Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. Our mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community. PPMD is headquartered in Middletown, Ohio with offices in Fort Lee, New Jersey. For more information, visit www.parentprojectmd.org.
SOURCE Parent Project Muscular Dystrophy