Blog

Register Today for PPMD’s 2021 Annual Conference — Virtual Edition!

PPMD’s Annual Conference – Virtual Edition Registration is now open for PPMD’s 2021 Virtual Annual Conference! 2021 remains an extraordinary time for our global community. We are getting closer to safer days ahead and we want…

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Duchenne Funding Letter Update: Progress in the House of Representatives

We’ve had a tremendous start in the House of Representatives for this year’s Duchenne Funding Request to Congress, with 31 House members signed on so far! Help us increase this number by contacting your member…

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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…

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WATCH: Federally Funded Research Studies in Duchenne (Webinar Recordings)

Every year our community heads to Washington, D.C. as part of PPMD’s Advocacy Conference (this year, being held virtually on March 10th — and there’s still time to register!) to communicate to Congress the need for continued…

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February 25, 2021

Senate Duchenne Champions Reintroduce BENEFIT Act Heading into PPMD’s Virtual Advocacy Conference

When people think of dynamic duos and classic pairings, they probably think of Batman and Robin, Fred and Ginger, or Oreos and milk. For those of us in the Duchenne and rare disease community, we…

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February 16, 2021

Save the Date for PPMD’s Annual Conference: Virtual Edition – June 23-26, 2021

PPMD’s Annual Conference – Virtual Edition June 23-26, 2021 It’s hard to believe that we are still in this pandemic. We are getting closer to safer days ahead and we want our Duchenne and Becker…

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February 12, 2021

Meet the 2021 PPMD Adult Advisory Committee (PAAC)

PPMD is thrilled to announce the members of the 2021 PPMD Adult Advisory Committee (PAAC)! PAAC members serve at a leadership capacity to represent the teen and adult Duchenne and Becker community. Despite the inability…

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February 3, 2021

TODAY: Virtual Town Hall at 1 PM EST

Advocacy in Action: Virtual Town Hall Facebook Live | February 3, 2021 To commemorate the passage of the MD-CARE Act, PPMD will host a Virtual Town Hall on Wednesday, February 3, 1 PM – 4…

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January 29, 2021

20 Years of the MD-CARE Act: Commemorating Progress & Charting the Future Course

On February 27, 2001, 20 years ago, the Duchenne community gathered in Washington, DC for the first ever Senate hearing focused on Duchenne muscular dystrophy. On that much-anticipated day, a young teenager, Ben Cumbo, Goodwill…

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January 25, 2021

PPMD Joins Letter Supporting the Appointment of Dr. Janet Woodcock as Acting Commissioner of the FDA

PPMD joins 81 other patient organizations in a letter led by The Everylife Foundation for Rare Diseases to the Biden Administration applauding the appointment of Dr. Janet Woodcock for the position of Acting Commissioner of…

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