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 26, 2021

COVID-19 Vaccination & Duchenne | Priority Access – Sample Letter

As states continue to move through their Phase 1 COVID-19 vaccination distribution protocols, PPMD wants to make sure you are equipped with resources to advocate for priority access. For this reason, we have developed a…

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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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January 21, 2021

WATCH: PGTME Hosts Gene Therapy Lecture Series

As the Duchenne community enters the era of gene therapy, many new concepts, terms and issues arise, including those related to research design, patient autonomy, sibling and family involvement, fairness in access and the quality…

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January 21, 2021

Postponed: SRP-9001 Update – Community Webinar

Postponed: SRP-9001 Update UPDATE: Sarepta will have to postpone the community webinar scheduled for today, January 21 at 12 PM EST. PPMD is deeply disappointed as we were hopeful to discuss current data and ask…

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January 19, 2021

PPMD Invests $1 Million in Satellos Bioscience to Support New Regenerative Medicine Technology

Parent Project Muscular Dystrophy is excited to announce a $1 million programmatic investment in Satellos Bioscience Inc. (Satellos) to support the development of a new regenerative medicine for the therapeutic treatment of Duchenne. Duchenne is…

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January 15, 2021

COVID-19 Vaccination & Duchenne: How mRNA Vaccines Work

As vaccines become available to help protect against COVID-19, PPMD is here to help you find answers to questions you might have about them. Here, with the help of Drs. Tim Cripe and Tim Franson,…

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January 15, 2021

COVID-19 Vaccination & Duchenne: How mRNA Vaccines Work

As vaccines become available to help protect against COVID-19, PPMD is here to help you find answers to questions you might have about them. Here, with the help of Drs. Tim Cripe and Tim Franson,…

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January 12, 2021

WATCH: PGTME Hosts Gene Therapy Lecture Series

As the Duchenne community enters the era of gene therapy, many new concepts, terms and issues arise, including those related to research design, patient autonomy, sibling and family involvement, fairness in access and the quality…

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January 12, 2021

Join PPMD’s 20th Anniversary of Advocacy in Action

2021 marks the 20th Anniversary of the MD-CARE Act, landmark legislation that launched coordinated federal efforts to confront Duchenne and Becker muscular dystrophy through research, public health, and quality care initiatives. This congressionally directed federal…

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