July 9, 2021 / Advocacy

122 Members of Congress Send Letter of Strong Support for Duchenne Priorities & Funding for 2022 Budget

This year marks 20 years since passage of the MD-CARE Act, landmark legislation led by PPMD that ushered in a new era of federal investment into the muscular dystrophies. This year also marked the first time ever PPMD organized an all-virtual Advocacy Conference.

It was a record-breaking year for participation, with over 425 advocates participating from 43 states in over 300 virtual meetings. We also had over 1,000 action alerts sent to Congress from community members across the country while advocates participated in meetings.

Record breaking participation has translated into record breaking results! We are pleased to report a very successful outcome for the Duchenne Fiscal Year 2022 (FY22) funding letters signatures.

122 members of Congress in total (94 in the House and 28 in the Senate) agreed to support our request sending a strong message of support behind Duchenne research, public health, drug development, and patient support initiatives. Both letters have bi-partisan support, which is critical for these efforts.

PPMD is grateful to the Foundation to Eradicate Duchenne for their partnership and collaboration on the Advocacy Conference.



  • Asks Congress to increase funding for CDC’s Muscular Dystrophy Program to $8 million and that money be used to evaluate:
    • The impact of the Duchenne Care Considerations, including on rural & underserved areas.
    • Availability of consistent and coordinated care for adults with Duchenne.
    • Impact of Duchenne and Becker on mental health of patients and caregivers.
  • It also requests that CDC issue a report on program priorities including progress to date and priorities for upcoming years.


  • Requests the NIH to focus Duchenne research on:
    • Challenges related to gene therapies, including delivery to individuals with neutralizing antibodies, manufacturing, and redosing of gene therapy.
    • The impact of Duchenne on both the brain and the heart.


  • Encourages the FDA to update the 2018 FDA Guidance on Duchenne to reflect advancement in gene therapies.
  • Convene a meeting to evaluate how to minimize the use of placebo in clinical trials.


  • Requests an increase from $10 million $12 million for the Duchenne Muscular Dystrophy Research Program (DMDRP) within the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP).
Download the Letter >

House Signatures

House MemberState and District
Terri A. SewellAL-7
Mark DeSaulnierCA-11
Julia BrownleyCA-26
Ted W.CA-33
Lucille Roybal-AllardCA-40
Mark TakanoCA-41
Nanette Diaz BarragánCA-44
Sara JacobsCA-53
Doris MatsuiCA-6
Ami Bera, M.D.CA-7
Joe NeguseCO-2
Jason CrowCO-6
John B. LarsonCT-1
Joe CourtneyCT-2
Jim HimesCT-4
Jahana HayesCT-5
Eleanor Holmes NortonDC at large
Lisa Blunt RochesterDE
Gus M. BilirakisFL-12
Alcee L. HastingsFL-20
Ted DeutchFL-22
Michael WaltzFL-6
Stephanie MurphyFL-7
Bill PoseyFL-8
Nikema WilliamsGA-5
Lucy McBathGA-6
Carolyn BourdeauxGA-7
Bill FosterIL-11
Sean CastenIL-6
Danny K. DavisIL-7
Raja KrishnamoorthiIL-8
Jan SchakowskyIL-9
André CarsonIN-7
John YarmuthKY-3
James P. McGovernMA-2
Seth MoultonMA-6
Stephen F. LynchMA-8
Jamie RaskinMD-8
Chellie PingreeME-1
Jared GoldenME-2
Haley StevensMI-11
Debbie DingellMI-12
Rashida TlaibMI-13
Peter MeijerMI-3
Daniel T. KildeeMI-5
Elissa SlotkinMI-8
Angie CraigMN-2
Emanuel Cleaver, IIMO-5
Michael GuestMS-3
Donald NorcrossNJ-1
Donald M. Payne, Jr.NJ-10
Mikie SherrillNJ-11
Josh GottheimerNJ-5
Tom MalinowskiNJ-7
Albio SiresNJ-8
Bill Pascrell, Jr.NJ-9
Lee ZeldinNY-1
Jerrold NadlerNY-10
Nicole MalliotakisNY-11
Carolyn B. MaloneyNY-12
Antonio DelgadoNY-19
Andrew R. GarbarinoNY-2
Elise M. StefanikNY-21
Claudia TenneyNY-22
John KatkoNY-24
Joseph D. MorelleNY-25
Brian HigginsNY-26
Chris JacobsNY-27
Thomas R. SuozziNY-3
Kathleen M. RiceNY-4
Troy BaldersonOH-12
Steve StiversOH-15
Bill JohnsonOH-6
Peter A. DeFazioOR-4
Brian FitzpatrickPA-1
Fred KellerPA-12
Conor LambPA-17
Dwight EvanPA-3
Mary Gay ScanlonPA-5
Susan WildPA-7
John RoseTN-6
David KustoffTN-8
Steve CohenTN-9
Sheila Jackson LeeTX-18
Eddie Bernice JohnsonTX-30
Colin AllredTX-32
Lizzie FletcherTX-7
Al GreenTX-9
Gerald E. ConnollyVA-11
Abigail D. SpanbergerVA-7
Peter WelchVT at large
Marilyn StricklandWA-10
Adam SmithWA-9
Carol D. MillerWV-3

Senate Signatures

Member FirstMember LastState
Mark KellyAZ
Kyrsten SinemaAZ
Diane FeinsteinCA
Richard BlumenthalCT
Chris CoonsDE
Rick ScottFL
Raphael WarnockGA
Dick DurbinIL
Ed MarkeyMA
Elizabeth WarrenMA
Chris Van HollenMD
Susan CollinsME
Angus KingME
Amy KlobucharMN
Kevin CramerND
Jeanne ShaheenNH
Cory BookerNJ
Bob MenendezNJ
Catherine Cortez MastroNV
Jacky RosenNV
Kirsten GillibrandNY
Sherrod BrownOH
Tammy BaldwinWI


The timing for when the funding bill (known as appropriations) is finalized can often be unpredictable and can be delayed for many reasons – rest assured, they eventually get done. The good news is you have done the hard part already, ensuring the best chance for Duchenne related report language and funding are included for agencies that impact Duchenne in the coming year. We will keep you posted when the bills pass through and are signed into law.

Thank you for all your efforts!

Save the Date for next year’s in-person Advocacy Conference

The 2022 Advocacy Conference is planned to be in person next year March 6-8, 2022. We hope to see you in Washington D.C.! Sign up for PPMD emails to be notified when registration is open.


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