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 congressional funding bill spared government programs that sponsor neuromuscular research, but it doesn't protect them from upcoming deep sequester cuts
The news is generally favorable for many important government-funded neuromuscular disease research projects, in the wake of Congress’ recent passage of a continuing resolution funding the government through the end of September.
Most government operations, except those funded through the full-year appropriations bills, will be maintained at essentially the same level as fiscal year (FY)...
Since 2001, the MD CARE Act has had a tremendously positive impact on MD research — but its reauthorization this year will require active outreach
Note: The MD CARE Act is a critical part of the historic effort to find cures for muscular dystrophies. Watch for articles in the coming weeks that delve further into the remarkable progress attributable to this important legislation.
A proposed bill to create a pediatric research network cites Duchenne MD and SMA as examples of diseases where research is making great strides
In July, days before the U.S. House of Representatives and Senate went into recess, bipartisan legislation was introduced in both houses to strengthen research into pediatric diseases.