Urge Congress to Support FY26 Duchenne Funding

Thanks to the hard work of our advocates and our congressional champions, Congress has included support for Duchenne and Becker Muscular Dystrophy in draft FY26 appropriations legislation and reports. Congress is considering this legislation this week and next before government funding expires on January 30.

We need advocates to send a message to Members of Congress urging them to support our priorities.

Language and funding included in the FY26 appropriations bills and reports currently being considered by Congress mirrors the language championed by Reps. Matsui (D-CA) and Balderson (R-OH) and Sens. Wicker (R-MS) and Klobuchar (D-MN):

  • Funds the Centers for Disease Control and Prevention (CDC) Muscular Dystrophy Program at $9 million
  • Funds the Duchenne Muscular Dystrophy Research Program (DMDRP) within the Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP) at $12.5 million
  • Directs the CDC to:
    • Enhance Muscular Dystrophy research and tracking initiatives focused on improving the health of the Duchenne community by engaging with external consortia to address bone health, adrenal health, cardiac health, puberty, weight management, and fertility
    • Examine successful newborn screening programs to be replicated and deployed nationally
    • Develop a next generation data system to capitalize on the information collected by MD STARnet
    • Provide a report to Congress on the creation of a new data integration plan within six months of implementation
  • Directs the National Institutes of Health (NIH) to:
    • Expedite the dissemination of research data to increase transparency and accelerate progress towards addressing the unmet medical need.
    • Improve data-sharing strategies to enable robust analyses by researchers and advance innovation in care.
    • Review the operation of the Muscular Dystrophy Coordinating Committee to ensure that the perspectives of patients and caregivers are appropriately incorporated.
    • Respond to the 2025 recommendations regarding the Muscular Dystrophy Coordinating Committee and provide updates on their implementation.

 

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