High energy, optimism prevailed at a February 2014 congressional briefing for Capitol Hill staffers on reauthorizing key muscular dystrophy legislation
"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.
News and updates from the MDA community
Featured in this issue: Muscle Walk in full swing across the country; anti-bullying advocate with Friedreich's ataxia publishes new book; MDA Clinical Conference to be held in March; MDA Team Momentum hits the ground running; Shamrocks program raises millions for the cause; MDA Art Collection achieves milestone; accessible playground database now available; Muscular Dystrophy Coordinating...
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
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 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)...