Have your members of Congress signed onto the Duchenne funding letter yet?

Please review the list of Senate and House members who have signed onto the Duchenne funding letter being circulated in both chambers.




Don’t see your House and or Senators signed on?

Take action NOW

What does the funding letter do?

This year’s request focuses on:

  • Maintaining level funding for the Centers for Disease Control and Prevention’s (CDC) Muscular Dystrophy program.
  • Accelerating an update of the Duchenne care standards so they keep pace with the latest in clinical practice and develop additional standards, including those for adults living with Duchenne.
  • Sustaining the National Institutes of Health’s (NIH) focus on Duchenne research, including focusing on important cardiac and pulmonary concerns of heavily impacted adult patients.
  • Advancing efforts to develop an effective Duchenne newborn screening initiative to help provide treatments to patients as soon as possible.
  • Advancing the Food and Drug Administration’s engagement with the Duchenne patient community to better understand patient and primary caregiver benefit/risk and related preferences.

Not sure who your member is? Find out NOW

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Comment by Mark Veilleux on April 14, 2015 at 12:19pm


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