November 1, 2018

PPMD Designates Children’s National Health System a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Children’s National Health System our 20th Certified Duchenne Care Center. PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people living with Duchenne, began…

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October 31, 2018

WATCH: An Update on Corticosteroids – Webinar Recording

PPMD and Dr. John Brandsema hosted a webinar on October 24, 2018 to discuss the current guidelines for steroid use in Duchenne muscular dystrophy, emerging data, and best practices. If you missed the live event,…

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October 9, 2018

2018 World Muscle Society Update

Last week, PPMD’s Founding President and CEO, Pat Furlong and our SVP of Research Strategy, Abby Bronson attended the annual World Muscle Society (WMS) meeting, this year in Mendoza, Argentina. Pat and Abby have provided…

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October 1, 2018

New Duchenne/Becker ICD Code in Effect Today — G71.01

Today at 12:01 AM  – while most of us were sound asleep – the International Classification of Diseases (ICD) code for Duchenne/Becker muscular dystrophy changed.  Previously, Duchenne muscular dystrophy was classified among a broad category…

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September 26, 2018

PPMD Continues Commitment to Duchenne Newborn Screening through Launch of Pilot in New York State

– PPMD Continues Commitment to U.S. Duchenne Newborn Screening Program – For the last 4 years, PPMD has been leading a national effort to build a Newborn Screening (NBS) infrastructure for Duchenne in the U.S. aimed…

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September 18, 2018

Your Duchenne Registry Data: Researchers Find Different Mutations Have Varying Effects on Progression

As curators of The Duchenne Registry, we are frequently asking you to submit your genetic test report to the Registry. You may often wonder why we need the actual laboratory report, and why we are…

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September 17, 2018

PPMD’s Ryan Fischer Joins the Muscular Dystrophy Coordinating Committee (MDCC)

When our community first came together with our Congressional champions in 1999 to carve a path forward for our Duchenne community, among the priorities we had was for all federal agencies that impacted our community…

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September 7, 2018

PPMD & Sarepta Partner to Launch Duchenne Outcomes Research Interchange

I am thrilled to announce PPMD’s plan to launch a patient- and physician-reported outcomes data warehouse – the Duchenne Outcomes Research Interchange (the Interchange) – which will combine data from The Duchenne Registry with clinician…

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September 5, 2018

PPMD Designates American Family Children’s Hospital a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named American Family Children’s Hospital in Madison, Wisconsin our 19th Certified Duchenne Care Center. PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people…

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August 30, 2018

Gene Repair Technology Restores Dystrophin Expression in Canine Model of Duchenne

We are encouraged to learn that Exonics Therapeutics, Inc., a biotechnology company focused on developing gene editing therapies to treat patients with Duchenne and other neuromuscular diseases, today announced the publication of a preclinical study…

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