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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March 27, 2020

Pfizer Shares Update on PF-06939926 Gene Therapy Trial and COVID-19

Pfizer has shared an update regarding the PF-06939926 gene therapy trial and COVID-19. Read Pfizer’s update: Our Clinical Trials UPDATE: March 25 —To avoid adding to the demands on the healthcare system during this unprecedented…

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March 27, 2020

WATCH: COVID-19 & Medications – What is safe in Duchenne?

Webinar Recording: COVID-19 & Medications — What is Safe in Duchenne? On March 26, PPMD hosted a webinar: COVID-19 & Medications: What is Safe in Duchenne? We were joined by four Duchenne specialists from our…

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March 27, 2020

Italfarmaco Shares Community Update on Givinostat Trials & COVID-19

Italfarmaco has shared an update with the community regarding givinostat clinical trials and COVID-19. Read the update from Italfarmaco Dear Duchenne Community, ITALFARMACO team would like to take this opportunity to inform you that we…

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March 27, 2020

PTC Shares Additional Update on the Availability of EMFLAZA During COVID-19

PTC has provided additional details about Emflaza during the COVID-19 pandemic. Read PTC Therapeutic’s Statement  PTC Therapeutics, Inc. Update on the Availability of EMFLAZA March 27, 2020 We want to assure patients and health care…

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March 26, 2020

Catabasis Shares March 2020 Newsletter

Catabasis Pharmaceuticals has shared the latest edition of their community newsletter, including information about edasalonexent and COVID-19, and responses to questions they have received. Click here to download the PDF.

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