March 10, 2021 / Advocacy

Action Alert! Support Progress in the Fight Against Duchenne

Urge your House and Senate Members to Support the 2022 Duchenne Funding Request & BENEFIT Act

20 years ago, Congress held a first-ever hearing on muscular dystrophy, paving the way to the landmark MD-CARE Act and two decades of progress. We need your help today to keep this momentum going!

It’s that time of year again. Members of the House and Senate are working, right now, to develop and submit their policy priorities for the annual spending bills that will fund the NIH, CDC, DOD, FDA, and other key federal agencies for 2022.

Today, during PPMD’s 2021 Advocacy Conference: Virtual Fly-In, over 400 advocates will be participating in 250+ virtual meetings with Congressional offices, urging them to continue to support vital efforts that will move us closer to ending Duchenne.

To ensure continued progress in the fight against Duchenne, take action today to support your fellow advocates by reinforcing our message to Congress from home!

Contact your House and Senate Members today and urge them to continue making Duchenne patient care, public health, and research a top priority.

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What are we asking Congress to do?

This year’s request to Congress is broken into two parts. We are asking members of the House and Senate to:


The annual Duchenne appropriations letter is the single most important tool that helps make sure the federal government continues to prioritize Duchenne and muscular dystrophy research and public health programs.

This year’s funding letter requests the following:

  • Increase funding from $6 million to $8 million dollars for Muscular Dystrophy related programs at the Centers for Disease Control (CDC).
  • Increase funding from $10 million to $12 million for the Department of Defense (DOD) Duchenne research program (CDMRP).
  • Request that Congress submit Duchenne report language to federal agencies that touch Duchenne, including CDC, NIH, and FDA. Report language provides guidance to the federal agencies about how to spend funding (your tax dollars) related to Duchenne.


This legislation builds on prior laws and will make sure patient engagement information is fully considered as part of the FDA benefit-risk framework, by requiring FDA to disclose how they use or incorporate patient experience data in the review of new therapies.

Patient Experience Data is data that is collected from patients and families with the intention to provide information about patients’ experiences with a disease or condition, including the impact of the disease or condition or related therapy or, and patient preferences for treatments.

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