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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April 19, 2023

PPMD’s Certified Duchenne Care Center Program – 2022 Impact & Progress

Every single person living with Duchenne deserves the best care possible. It is important that families know who is in charge of delivering the care they need and understand what centers are providing optimal, standardized…

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April 15, 2023

WATCH: Connect With the Experts – Bone Health in Duchenne (Webinar Recording)

Connect With the Experts – Bone Health in Duchenne PPMD recently hosted a webinar led by expert endocrinologists Dr. Leanne Ward (University of Ottawa), Dr. Janet Crane (Johns Hopkins) and Nadia Merchant (Children’s National) to…

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April 3, 2023

The Heart Is a Muscle Too: PPMD Convenes 80+ Professionals for 2023 Cardiac Care Workshop

PPMD Convenes 80+ Professionals for 2023 Cardiac Care Workshop Last week in New Orleans, PPMD held the 2023 Cardiac Care and Duchenne – Professionals Workshop, convening over 80 clinicians, researchers, and industry partners to continue…

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March 28, 2023

PPMD Announces Cardiac Care Workshop Report, Advancing Understanding of Heart Disease in Duchenne

The heart is a muscle too. And PPMD has been asking questions about the heart for many years: What do we know and what do we need to learn about heart disease (cardiomyopathy)? If treatments…

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