High energy, optimism prevailed at a February 2014 congressional briefing for Capitol Hill staffers on reauthorizing key muscular dystrophy legislation

posted on March 6, 2014 - 2:20pm
"The energy in the room was high, and the mood was optimistic," said Annie Kennedy, MDA's senior vice president of advocacy, speaking about the Congressional briefing on reauthorization of the MD-CARE Act that she attended and helped to organize. The briefing was co-hosted by MDA and other muscular dystrophy organizations in Washington, D.C., on Feb.

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Quest Winter 2014
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

Advocacy is needed to pass amendments to this landmark bill that will expand muscular dystrophy research and health care efforts

posted on October 3, 2013 - 9:12am
Quest Vol. 20, No. 4
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:
posted on October 3, 2013 - 9:11am
The timeline looks at the history of the Muscular Dystrophy Community Assistance, Research and Education (MD CARE) Act, which was passed in 2001 to advance research and health care for all forms of muscular dystrophy. To learn more about the MD CARE Act and MDA's involvement in the 2013 reauthorization, read MD CARE Act 2013: Building on Success.

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

posted on September 26, 2013 - 11:16am
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

posted on September 11, 2013 - 12:15pm
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

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.