MD Care Act

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.

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.

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.

MDA advocacy in Washington

posted on April 1, 2013 - 9:23am
Quest Vol. 20, No. 2
I have had the great privilege of witnessing some of the most transformative legislative moments in our MDA community’s history. While we have many heroes and legends among us, there are also many heroes whose names most will never know — people who, through their outreach to their elected officials, brought great champions to the cause of neuromuscular disease research and services.

Since 2001, the MD CARE Act has had a tremendously positive impact on MD research — but its reauthorization this year will require active outreach

posted on February 14, 2013 - 11:31am
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.
posted on November 1, 2008 - 10:07am
QUEST Vol. 15, No. 6
As the 110th Congress drew to a close this fall, a tremendous victory emerged for people with muscular dystrophy: the reauthorization of the MD-CARE Act. The Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education (MD-CARE) Amendments of 2008 updates the 2001 law that coordinates and focuses federal research on different forms of muscular dystrophy, collects...