July 20, 2023

CDCC Spotlight: Nemours Children’s Hospital

A Gold Standard of Collaboration  PPMD’s Certified Duchenne Care Centers (CDCC) are clinics of excellence, demonstrating comprehensive and coordinated care for individuals living with Duchenne and Becker muscular dystrophy. Dr. Mena Scavina, Pediatric Neurologist and…

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July 14, 2023

WATCH: ELEVIDYS: What This Means for You and Your Family (Webinar Recording)

In case you missed it, PPMD was joined by Drs. Russ Butterfield of University of Utah and Sue Apkon of Colorado Children’s earlier this week to talk through some of the common questions around the…

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June 22, 2023

FDA grants approval via accelerated approval pathway to ELEVIDYS: First-ever gene therapy for individuals with Duchenne ages 4-5

Today is an incredible milestone for the entire Duchenne community. It is a first step. But a huge step forward. Today, the FDA has granted accelerated approval to ELEVIDYS (delandistrogene moxeparvovec-rokl), a micro-dystrophin gene therapy…

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June 20, 2023

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

Today Parent Project Muscular Dystrophy announced the expansion of its renowned Certified Duchenne Care Center (CDCC) Program with the certification of the clinic at Norton Children’s in Louisville, KY. This is an exciting step for…

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June 19, 2023

PPMD publishes results of study to understand Duchenne patients’ and caregivers’ perspectives on corticosteroids

Earlier this month, the publication, A Mixed-Method Study Exploring Patient-Experienced and Caregiver-Reported Benefits and Side Effects of Corticosteroid Use in Duchenne Muscular Dystrophy, was accepted into the Journal of Neuromuscular Diseases. Background  PPMD has led…

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June 16, 2023

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

Today Parent Project Muscular Dystrophy announced the expansion of our renowned Certified Duchenne Care Center (CDCC) Program with the certification of Boston Children’s Hospital. This is an exciting step for the CDCC Program as it…

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June 13, 2023

Over 1,000 Free Carrier Tests Performed through PPMD’s Decode Duchenne Program!

We are thrilled to announce a new milestone achieved in the Decode Duchenne genetic testing program. We recently reached 1,000 carrier tests performed! This means that over 1,000 women have received free carrier testing through…

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June 6, 2023

New Duchenne School Resources

Even though school is officially out for summer, it’s never too early to start planning for next year. We are here to help navigate this Duchenne journey together and connect you with any additional resources…

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May 31, 2023

Update on PPMD’s newborn screening efforts

For the past decade, PPMD has been leading efforts for newborn screening for Duchenne. As part of that process, PPMD, with co-sponsor Muscular Dystrophy Association (MDA), submitted a nomination package to the Recommended Uniform Screening…

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April 27, 2023

PPMD Joins Duchenne Parent Project aps Endocrine & Osteoporosis International Professional Care Meeting

How do we prevent the first fracture? How does weight & puberty affect bone health? How do we understand and implement new therapies?  All of these questions and more will be covered this week as…

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