Blog

August 25, 2023

WATCH: Advocating for Access: Navigating Approved Therapies in Duchenne (Webinar Recording)

Understanding and navigating insurance access can be daunting. That’s why PPMD kicked off a new webinar series, “Advocating for Access,” earlier this week with its first monthly installment on Navigating Approved Therapies in Duchenne. PPMD’s…

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August 21, 2023

Safe & Unsafe Medications in Duchenne

PPMD’s Safe & Unsafe Medications Resource lists medications that are frequently used in the management of Duchenne, as well as both over-the-counter and prescription medications used for other conditions not specific to Duchenne that you…

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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

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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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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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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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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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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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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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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