Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts
Times have changed dramatically since 2001, thanks to the passage that year of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act — a bill designed to advance research and health care for all forms of muscular dystrophy. Among the changes:
Geneticist R. Rodney Howell, chairman of MDA's Board of Directors, testified before a U.S. Senate subcommittee Sept. 26 to support continued funding for newborn screening
R. Rodney Howell, a pediatrician and medical geneticist who chairs MDA's Board of Directors, advocated for passage of the Newborn Screening Saves Lives Reauthorization Act of 2013 (S. 1417) before a U.S. Senate subcommittee on Thursday, Sept. 26.
Howell emphasized that
The daylong, MDA-supported conference held Aug. 24, 2013, focused on all aspects of Becker muscular dystrophy; videos are now online
The 2013 MDA-supported Becker Muscular Dystrophy Conference, held Aug. 24 in Baltimore and co-hosted by MDA and Johns Hopkins Medicine, was "high-energy" with "phenomenal" presenters, says Annie Kennedy, MDA's senior vice president of advocacy, who attended and helped organize the meeting.
Some 130 people attended in person and many more, including some from outside the United States, attended...
MDA advocacy efforts are focused on accelerating research advances and treatment discovery while expanding the resources available to those affected with the disease
Today, research discoveries are bringing us closer than ever to effective therapies for spinal muscular atrophy (SMA) and other neuromuscular diseases. Medical knowledge of neuromuscular disease is broadening, and children and adults with these diseases are living longer, fuller lives.
But significant challenges remain.
The Muscular Dystrophy Coordinating Committee brings together advocates and federal agencies with the goal of expanding, strengthening and coordinating MD research and care efforts
Update (Sept. 4, 2013): A videocast of the Aug. 26, 2013, MDCC meeting is now available. See Muscular Dystrophy Coordinating Committee (MDCC) Meeting — August 2013. Watch presentations by Valerie Cwik, MDA's executive vice president and chief medical and scientific officer, at time point 2:31:47; and Annie Kennedy, MDA's senior vice president for advocacy, at time point 4:11:26.
The annual BMD conference, held in Baltimore and streamed live online, is centered on the theme ‘optimizing the lived experience of BMD’
MDA and John Hopkins Medicine will present the 2013 national Becker Muscular Dystrophy Conference Saturday, August 24, in Baltimore. Free to all participants with BMD and their family and friends, the conference can be attended in person or online.
MDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policies
"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore.