July 20, 2021

Action Alert: Urge your House and Senate Members to Cosponsor the BENEFIT Act

We need your help! Please encourage your Senators to cosponsor the BENEFIT Act. This legislation will amend the Food, Drug and Cosmetic Act (FDCA) to ensure that patient experience, PFDD and related data – including…

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July 16, 2021

Reps. Matsui & Wenstrup Introduce the Bipartisan BENEFIT Act to Increase Patients’ Role in Drug Approvals Process

PPMD applauds Representatives Matsui and Wenstrup for today’s introduction of the bipartisan, commonsense BENEFIT Act, legislation conceived by PPMD that will help ensure the patient voice is at the center of the FDA’s review process….

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July 9, 2021

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…

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July 1, 2021

PPMD Is Moving to Washington, DC!

PPMD’s Main Office is Moving to Washington, DC! When Parent Project Muscular Dystrophy started in 1994, formed by a small group of parents and grandparents out of Ohio, we knew that one of our first…

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May 5, 2021

PPMD Submits Comments on Discussion Draft of the Home and Community Based-Services Access Act (HAA)

PPMD has submitted written comments on a discussion draft for potential legislation called the Home and Community Based-Services Access Act (HAA). This legislation aims to address the current inefficient patchwork of home and community-based services…

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April 13, 2021

Take Action Before House Letter Closes! Deadline is Friday, April 16

Our numbers in the House of Representatives for this year’s Funding Request to Congress continue to rise!  We have 65 House members signed on so far with the deadline for signatures this Friday, April 16….

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April 1, 2021

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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March 29, 2021

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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March 10, 2021

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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March 5, 2021

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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