Blog

Thank you for always being our strength

Thank you for always being our strength Re·sil·ience: (noun) the capacity to recover quickly from difficulties; strength. Our Duchenne community is the definition of resilience. And we have never had that resilience challenged like we…

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Introducing PPMD’s Genetic Counselor Office Hours!

Introducing PPMD’s Genetic Counselor Office Hours! We are making it easier than ever before to connect with the genetic counselors at PPMD’s Duchenne Registry. The genetic counselors at The Duchenne Registry are board-certified and have…

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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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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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PPMD’s Pat Furlong Presents at FNIH Biomarkers Consortium

Last month, PPMD’s Founding President & CEO Pat Furlong presented at the Foundation for the National Institutes of Health (FNIH) Biomarkers Consortium, addressing the use of digital health technologies to improve therapeutic research and development….

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January 15, 2020

PPMD’s Duchenne Drug Development Roundtable Creates Clinical Trial Harmonization Guidances

PPMD is excited to share the recently developed Clinical Trial Harmonization Guidances. These guidances are the result of PPMD’s Duchenne Drug Development Roundtable working collaboratively in the pre-competitive space to encourage better consistency across companies…

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December 18, 2019

PPMD Awards $465,000 Grant to The Ohio State University to Rescue Cardiac Dystrophin & Function in Duchenne

Parent Project Muscular Dystrophy is excited to announce that Renzhi Han, an associate professor at The Ohio State University College of Medicine, will receive a $465,000 grant to study the potential use of in vivo…

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December 12, 2019

FDA Authorizes First Test to Aid in Newborn Screening for Duchenne

Today, the FDA authorized the marketing of the first test to aid in newborn screening for Duchenne. As you know, PPMD has been leading the effort for newborn screening in Duchenne. In October, the first…

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November 18, 2019

Finding Hope, Seeing Progress

Clinical trials are HARD. How many times have you heard that? But it’s true. Expectations, anticipation, screening, burden of participation with frequent clinic visits, blood draws, outcome measures and waiting for news. This year has…

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November 13, 2019

PPMD Certifies Motol University Hospital in the Czech Republic

PPMD is thrilled that Motol University Hospital will be the second Global Certified Duchenne Care Center. Together with the Parent Project Czech Republic advocacy group, Jana Haberlova and the team at Motol University Hospital are doing an…

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