Legislation and Policy

MDA families eager for research breakthroughs take active roles to accelerate therapy development and spread awareness of MDA's mission

posted on July 14, 2015 - 3:19pm
Children and adults living with neuromuscular diseases are not only awaiting progress in the search for treatments and cures; they are directly supporting and advancing that progress in real and significant ways.

MDA advocacy efforts are focused on accelerating research advances and treatment discovery while expanding the resources available to those affected with the disease

posted on August 29, 2013 - 10:37am
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

posted on August 23, 2013 - 12:35pm
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 congressional funding bill spared government programs that sponsor neuromuscular research, but it doesn't protect them from upcoming deep sequester cuts

posted on March 25, 2013 - 12:27pm
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)...

MDA is partnering with federal agencies and other groups serving youth with disabilities to break down barriers for young people transitioning from childhood to adulthood

posted on December 6, 2012 - 3:31pm
Like many high school seniors, Drew is busy choosing a college and preparing for the big transition from life at home to life on a college campus. Unlike his peers, Drew has Duchenne muscular dystrophy.

Know your candidates' views on crucial issues, and use your power as an advocate and a voter

posted on July 1, 2012 - 3:01pm
QUEST Vol. 19, No. 3
Did you know that people with disabilities are 10 percent less likely to be registered to vote, and 20 percent less likely to actually go to the polls and vote in an election?

If passed into law, the ABLE Act would create special savings accounts to be used for disability-related expenses without threatening other government benefits

posted on January 17, 2012 - 2:42pm
posted on January 1, 2012 - 12:14pm
QUEST Vol. 19, No. 1
On a beautiful autumn day in September, six accomplished adults came to Washington, D.C., representing the voice and experience of hundreds of others who share the common experience of being adults living with “pediatric-onset” neuromuscular disorders. “We were the generation that was hoped for — and now we’re here,” said Vance Taylor, 33, a homeland security consultant from Washington, D.C., who...