Parent Project Muscular Dystrophy Marks 10 Years of Advocacy With One Voice Advocacy Summit
Efforts over decade result in $192 million in Duchenne-specific federal investment
HACKENSACK, N.J., Feb. 8, 2011 /PRNewswire-USNewswire/ – Parent Project Muscular Dystrophy (PPMD) – the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne) – will host their annual Advocacy Conference, including the One Voice Advocacy Summit, in Washington, D.C. from February 13 – 15, 2011.
February 14 will mark the ten-year anniversary of the introduction of the MD-CARE Act, the first muscular dystrophy legislation passed by Congress. PPMD led the charge for this critical piece of legislation, which established the National Institutes of Health (NIH) Muscular Dystrophy Coordinating Committee (MDCC) and the Centers for Disease Control and Prevention (CDC) data collection on muscular dystrophy initiative. The MD-CARE Act also called for the creation of scientific Centers of Excellence, named after the late Senator Paul D. Wellstone, across the country to accelerate research on muscular dystrophy. In 2008, again under the leadership and commitment of PPMD’s advocacy campaign, Congress extended the MD-CARE Act to continue funding vital research.
Each February, families in the Duchenne community gather in Washington, D.C. to visit their members of Congress and remind them of the ongoing importance of supporting federal muscular dystrophy research and public health strategies. This year’s conference, however, will feature an added element: the One Voice Advocacy Summit. The One Voice Advocacy Summit provides an unprecedented opportunity for discussion with stakeholders and key thought leaders on pressing issues that impact the lives of boys with Duchenne and for direct engagement with national policy makers to demonstrate the importance of continued Duchenne research funding. PPMD President and CEO, Pat Furlong, explains:
“When the MDCC was created, as a result of the MD-CARE Act, the committee was charged with putting together an action plan for muscular dystrophy research and care. In 2005 the plan was completed with the understanding that an update was to be provided in 2011. PPMD thought that by holding a national summit, the patient’s voice could be heard and could help inform the plan update. This is the first time our community has held this kind of meeting. It’s a unique approach to inform our government of the patients’ concerns along with the findings of top researchers and scientists in the field.”
Ms. Furlong goes on to explain the importance of PPMD’s advocacy campaign in the fight to end Duchenne: “When this community travels to our nation’s capital every year, we take our meetings very seriously. We know that we must tell our stories to anyone in Washington that will listen. We know that in telling our stories, we are telling the stories of everyone living with Duchenne. And our efforts have paid off. The most common fatal genetic disorder diagnosed during early childhood – Duchenne muscular dystrophy – was not a priority. But our voices, speaking as One Voice, have resulted in approximately $192 million in Duchenne-specific federal funding over the last decade. We have also made great strides in care and the advancement of therapies with clinical trials coming to fruition. Our sons are living longer, healthier lives. This year we recognize the landscape in Washington is changing again. We recognize that it is our job to respond and to demonstrate how the federal investments are paying off. It is time for our community, as One Voice, to come together to help guide the future.”
PPMD will publish findings presented at the One Voice Advocacy Summit in Roll Call later this year. For more about PPMD’s advocacy program, visit ParentProjectMD.org.
About Duchenne muscular dystrophy
Duchenne, the most common form of childhood muscular dystrophy, is a progressive and fatal muscle disorder affecting boys and young men that causes the loss of muscle function, wheelchair dependency and a decline in respiratory and cardiac function.
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. The organization’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is headquartered in Middletown, Ohio with offices in Hackensack, New Jersey. For more information, visit www.parentprojectmd.org.
SOURCE Parent Project Muscular Dystrophy