Blog

Santhera Pharmaceuticals Launches Formal Expanded Access Program in the U.S.

PPMD is pleased to learn that Santhera Pharmaceuticals has launched a formal expanded access program in the U.S. for their investigational therapies, including idebenone. Learn more by visiting the Santhera website.

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The Duchenne Carrier Characterization Study at Nationwide Children’s Hospital

May is a month to celebrate mothers. PPMD’s dedication to mothers in our community is, in small part, reflected in our dedication to doing all we can to care for female carriers of Duchenne. The…

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End Duchenne Tour Recap: St. Paul, MN

On Saturday, April 28, PPMD had the pleasure of hosting the End Duchenne Tour in St. Paul, MN at Gillette Children’s Specialty Healthcare. This was our first tour visit to St. Paul and we are…

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PPMD’s 2018 Annual Conference Agenda is Now Available!

PPMD is excited to unveil the agenda for our 2018 Annual Conference in Scottsdale, AZ, June 28 – June 30, 2018! Each year, PPMD works hard to put together a comprehensive agenda featuring updates in…

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May 16 Webinar: Roche/Genentech Anti-Myostatin Adnectin RG6206 in Duchenne

Roche/Genentech will join Parent Project Muscular Dystrophy for a webinar on Wednesday, May 16 at 1:00 PM EDT to provide an update on their Anti-Myostatin Adnectin (RG6206) development program. You will learn more about the team at…

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May 9 Webinar: Introducing PPMO – The Future of Precision RNA-Targeted Therapies for Duchenne

Sarepta Therapeutics, Inc. will join Parent Project Muscular Dystrophy for a webinar update on Wednesday, May 9 at 1:00 PM EDT to discuss PPMO, Sarepta’s next generation precision RNA-targeting therapeutic platform for use in Duchenne…

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PPMD’s Duchenne Registry Reaches 10-Year Milestone

PPMD is thrilled to announce that DuchenneConnect is now The Duchenne Registry. We recently reached a significant milestone of collecting 10 years worth of patient-reported data, and YOU have made this possible! Thank you for…

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PPMD & NIH to Host “Contractures in Duchenne and Other Neuromuscular Conditions”

PPMD and NIH are convening a group of more than 60 researchers, post-docs, neurologists, surgeons, industry partners, physiatrists, and physical therapists on April 19-20, 2018, who have experience and expertise in the development, prevention, and…

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70 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

We are pleased to report our final numbers for the FY19 letters. In total, 19 Senators signed onto the Senate FY19 letter, joining 51 members of the House. That makes a solid 70 members of Congress (House…

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Why is Bone Health Important?

Just like a house needs a stable frame, your body needs a stable skeleton. Bone health is important for anyone living with Duchenne, whether walking (ambulatory) or those no longer able to walk without the…

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