October 21, 2022

Calling All Adults with Duchenne & Becker: Join the 2023 PPMD Adult Advisory Committee (PAAC)

Have you been looking for a way to engage with the community more? Do you have a personal experience that you would like to share with the larger community or through federal and state advocacy…

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October 21, 2022

WATCH: Edgewise Therapeutics – A Novel Approach to Protect Muscle in Duchenne & Becker (Webinar Recording)

PPMD was joined by Edgewise Therapeutics for a community webinar on October 19, 2022. Edgewise’s Chief Scientific Officer and Chief Medical Officer discussed the clinical development program for EDG-5506, a myosin modulator, in Becker and…

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October 20, 2022

WATCH: Connect With the Experts – Genitourinary Health (Webinar Recording)

PPMD recently hosted a webinar on genitourinary (GU) concerns (or the reproductive organs and the urinary system health) for individuals with Duchenne. Rachel Schrader, VP of Clinical Care and Education, spoke with a panel of…

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October 20, 2022

Save the Date for PPMD’s 2023 Educational Events!

PPMD is excited to announce our 2023 schedule of educational events, including PPMD’s Annual Conference, End Duchenne Tour, and Advocacy Conference. Featuring a variety of in-person and hybrid events, we look forward to bringing our community together to…

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October 18, 2022

Edgewise Announces 6 Sites Enrolling for CANYON, Phase 2 Trial of EDG-5506 in Becker

Edgewise has shared a community letter announcing that six sites are now open for enrollment for the Canyon trial for individuals living with Becker muscular dystrophy. Canyon is a Phase 2 trial of EDG-5506, a…

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October 17, 2022

The Duchenne Registry has three new surveys!

The Duchenne Registry, powered by PPMD, is the largest, most comprehensive patient-reported registry for Duchenne and Becker muscular dystrophy. With over 5,000 registrants, the Registry connects Duchenne and Becker patients with actively recruiting clinical trials…

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October 14, 2022

Thank You for Joining the Race to End Duchenne Virtual Series!

Thank you to everyone who joined the Race to End Duchenne Virtual Series – Global Walk 4 Duchenne, demonstrating the power of our community when we come together! 100 people joined the Global Walk for…

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October 11, 2022

PPMD Announces Pediatric Certified Duchenne Care Center at Stony Brook Children’s Hospital

Today Parent Project Muscular Dystrophy announced the expansion of our renowned Certified Duchenne Care Center (CDCC) Program with the pediatric certification of Stony Brook Children’s Hospital, in Stony Brook, New York. This is an exciting…

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October 7, 2022

38th Annual Friar Fight to End Duchenne Golf Tournament Raises Over $43,000 in the Fight to End Duchenne

The 38th Annual Friar Fight to End Duchenne Golf Tournament raised $43,712 for PPMD this year, bringing their total raised for our organization to $1,129,475! This event continually makes us proud, to see such wonderful…

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October 6, 2022

PPMD Submits Updated Community Draft Guidance for Duchenne, Becker, and Related Dystrophinopathies to FDA

An exciting update to the revised community-led Duchenne Guidance for FDA is that it has been officially submitted to the agency! As you know, this Community Draft Guidance will serve as an update to the…

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