August 18, 2023

Mitchell’s Run Thru Rockford Celebrates 25 Years

For 25 years, residents of Rockford, Michigan have supported PPMD’s mission to end Duchenne by participating in Mitchell’s Run Thru Rockford. Created and organized by the Peterson family, in honor of their son Mitchell, this 5K and Kids for Kids…

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August 17, 2023

CDCC Spotlight: Children’s Health of Dallas

Providing Support for School It’s difficult enough navigating the medical system, but many parents of children with Duchenne face challenges while seeking accommodations and support through their school systems as well. At Children’s Health of…

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August 10, 2023

PPMD’s RUSP nomination package for Duchenne passes first hurdle in federal committee vote

PPMD’s nomination package to add Duchenne to the Recommended Uniform Screening Panel (RUSP) passed the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) Nomination and Prioritization vote today! This decision marks another exciting…

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August 10, 2023

A Story of Firsts

On a sunny day in June of 1984, the word “Duchenne” first entered my life. “Go home and love them.” Well intentioned advice from doctors who could offer no hope. Could direct us to little…

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August 3, 2023

CDCC Spotlight: Children’s Hospital Colorado

Empowering Adults  Transitioning from pediatric to adult care can feel monumental and overwhelming. Finding new doctors, establishing rapport and trust, and taking control of your health care decisions while approaching adulthood is daunting. Moreover, “adulting”…

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August 2, 2023

PPMD Publishes 15 Year Registry Report 

PPMD is excited to announce the release of the 15 Year Registry Report. This report is the culmination of data provided by registrants in The Duchenne Registry, as well as collaborative work with expert clinicians…

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August 1, 2023

PPMD Gathers Experts for Adult Care & Transition Meeting Ahead of 2023 Annual Conference

Duchenne & Becker Adult Care & Transition Meeting Recap Ahead of PPMD’s 2023 Annual Conference in June, around 40 healthcare professionals from around the country gathered for a one-day meeting to discuss an important topic…

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July 31, 2023

New Clinical Experiences Survey

PPMD strives to ensure that every patient with Duchenne and Becker muscular dystrophy receives the best care possible. An important part of PPMD’s certification and continued maintenance of Duchenne Care Centers around the country is…

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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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