August 3, 2021

New Resource! Duchenne Carriers: Your Questions Answered

Duchenne Carriers: Your Questions Answered Being a carrier of Duchenne can affect so many aspects of a woman’s life, including health care, family planning, and mental health. As part of our efforts to better understand…

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July 29, 2021

Are You Ready for Kickoff? Coach To Cure MD Returns on Saturday, September 25th

Mark your calendars — Coach To Cure MD, presented by Werner Ladder, is back in-person and in a big way for its 14th season on Saturday, September 25th! Join our team and help #TackleDuchenne. Whether…

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July 22, 2021

PPMD Begins Process to Update Community-Led Duchenne Guidance for FDA

PPMD takes every action necessary to ensure therapies are developed efficiently and that they include the voice of the community. In 2014, we came together as a community, creating and submitting to the FDA the…

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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 15, 2021

New! Teens & Adults: Join the PAAC Chats App

Teens & Adults with Duchenne & Becker: Join the PAAC Chats App PPMD’s Adult Advisory Committee, better known as the PAAC, has launched a new community platform for teens and adults living with Duchenne and…

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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 6, 2021

Recently Reported Updates from PPMD’s 2021 Virtual Annual Conference

PPMD’s 2021 Virtual Annual Conference: Recently Reported Updates As a new addition to PPMD’s 2021 Virtual Conference, PPMD invited industry partners to share new data with the community live during the Conference in a series…

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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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June 30, 2021

Rewatch PPMD’s 2021 Virtual Annual Conference

Did You Miss PPMD’s 2021 Virtual Annual Conference? PPMD’s 2021 Virtual Annual Conference was incredible with close to 2,000 families, care providers, researchers, scientists, and industry partners joining us for four days of informative updates…

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