April 6, 2020

91 Members of Congress Send Letter of Strong Support for Duchenne Priorities & Funding for Next Year’s Budget

As a result of 123 meetings with Members of Congress in Washington DC, and over 2,500 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne Fiscal Year 2021 (FY21)…

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April 6, 2020

Audentes Therapeutics Shares Community Update on Duchenne Program & COVID-19

Audentes Therapeutics has shared an update with the community regarding their Duchenne program and COVID-19. Read the Update from Audentes Dear Duchenne Patient Leaders, On behalf of the team at Audentes, we hope that you…

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April 3, 2020

WATCH: Family Friday – Staying Active with Physical Therapy & Your DuchenneDaily20

Family Friday: Staying Active with Physical Therapy & Your DuchenneDaily20 For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching…

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April 2, 2020

WATCH: COVID-19 & Adults with Duchenne

Webinar Recording: COVID-19 & Adults with Duchenne On April 1, 2020 PPMD hosted an interactive webinar focusing on the adult Duchenne population and their unique risks for COVID-19, featuring representation from across our network of…

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April 1, 2020

Santhera Shares Community Update on SIDEROS Trial & COVID-19

Santhera Pharmaceuticals has shared an update with the community regarding the SIDEROS clinical trial and their activities during the COVID-19 epidemic. Read the update from Santhera Dear Duchenne community, Much has changed in the world…

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April 1, 2020

Duchenne Research Needs You: Your Self-Quarantine Checklist

Your Self-Quarantine Checklist: 1. Clean the house 2. Organize the closets 3. Join The Duchenne Registry!   Downloading the Registry’s new smartphone app is much easier and more fun than cleaning house or organizing closets!…

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April 1, 2020

PPMD Announces First Dual Pediatric & Adult Certified Duchenne Care Center, Kennedy Krieger Institute

Today Parent Project Muscular Dystrophy (PPMD) announced the expansion of our renowned Certified Duchenne Care Center Program (CDCCP) with the program’s second Adult Certified Duchenne Care Center and first dually-certified center, the clinic at Kennedy…

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March 30, 2020

WATCH: Family Friday – Homeschooling Hacks

Family Friday: Homeschooling Hacks For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching Family Fridays to discuss topics that…

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March 30, 2020

Physical Therapy for Your Lungs

The lungs of people living with Duchenne are not directly affected by the lack of dystrophin in Duchenne. However, the muscles responsible for breathing, including the diaphragm and the intercostal muscles (the tiny muscles between…

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March 30, 2020

Solid Biosciences Shares Letter to the Duchenne Community: COVID-19 Update

Solid Biosciences Inc. has shared an update with the community regarding the IGNITE DMD clinical hold and COVID-19. Solid’s Letter to the Duchenne Community: Letter to the Duchenne Community: COVID-19 Update Dear Duchenne Community, During…

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