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BREAKING NEWS: Houses of Representatives Passes MD-CARE Act Amendments!

The House of Representatives today approved the landmark MD-CARE Act so the law can continue getting results for all patients impacted by Duchenne and other forms of muscular dystrophy. The House approved the bill, H.R. 594, sponsored by Congressman Dr. Michael Burgess of Texas and Eliot Engel of New York, by unanimous voice voteIt must now clear the Senate to be signed into law by President Obama. Once that occurs, it will update the MD-CARE Act, which was enacted in 2001 and last updated in 2008.

Today’s action is another significant milestone for all of us in the Duchenne community. With this bill, we will ensure the MD-CARE Act keeps pace with the scientific and clinical needs of today and tomorrow, particularly for those with Duchenne and other forms of muscular dystrophy who are now living into adulthood.


We thank Congressmen Burgess and Engel for their tremendous leadership on behalf of all families impacted by muscular dystrophy.

Once it is passed by the Senate, the legislation will, among other things, ensure cardiac and pulmonary issues receive the research attention they need, will update and enhance the CDC’s muscular dystrophy surveillance efforts, will ensure all necessary federal agencies participate in the Muscular Dystrophy Coordinating Committee, and will update and strengthen the standards of care for all forms of muscular dystrophy.


We will now be urging the Senate to promptly take up and pass this bill so this much-needed update to the law can be made as quickly as possible.

Today we celebrate another milestone in our community! Further proof that Strength Happens Together.

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