advocacy

MDA Names Kristin Stephenson to VP of Policy and Advocacy to Build on Recent Landmark Victories

MDA Community Helps Pass Newborn Screening Saves Lives Reauthorization Act

UPDATE: PRESIDENT SIGNS NEWBORN SCREENING SAVES LIVES REAUTHORIZATION ACT INTO LAW, DECEMBER, 19, 2014

MDA says bill could lead to earlier diagnoses, better treatment outcomes for people fighting certain muscle diseases

Improving Drug Development: The MDA Community Weighs In

Last month, the Energy & Commerce Committee of the U.S. House of Representatives launched a bipartisan effort called the 21st Century Cures initiative to accelerate the process by which drugs are discovered and delivered to patients. Congress has sought input from the patient community and advocacy organizations like MDA.

MD-CARE Act Congressional Briefing Accelerates Reauthorization Momentum

"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.

MDA Chief Executive Implores Congress To Reauthorize MD-CARE Act

WASHINGTON, Feb. 25, 2014 — At a Congressional hearing today in Washington, the Muscular Dystrophy Association’s (MDA) chief executive briefed legislators on the enormous impact of the MD-CARE Act passed in 2001 and implored lawmakers to reauthorize this crucial legislation on behalf of the 100,000 Americans with muscular dystrophies.

2013 BMD Conference Covered Research, Medical Care and Daily Life

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 online.

Live Stream of MDCC Meeting Shows Advocacy in Action

Want to spend Monday watching advocacy in action advancing the cause of muscular dystrophy research?

Becker MD Conference Can Be Attended Online Aug. 24

MDA and John Hopkins Medicine will present the 2013 national Becker Muscular Dystrophy Conference Saturday, August 24, in Baltimore. Free to all participants with BMD and their family and friends, the conference can be attended in person or online.

MDA Study Reveals ‘Cost of Illness’ for ALS, DMD, MMD

"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore. It's real data."

Newborn Screening Recommended for Pompe Disease

The Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC) today voted to add Pompe disease (acid maltase deficiency) to a list of diseases that it recommends states screen for in newborns.

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