October 8, 2020

2020 World Muscle Society: Duchenne Research Updates

Last week the World Muscle Society (WMS) held its 25th Annual Conference. As is often the case during this pandemic, the WMS meeting was held virtually for the first time. WMS provides an opportunity for…

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October 6, 2020

First Results from PPMD/Nationwide Carrier Study – Evidence of Cardiomyopathy by Exercise & Cardiac MRI

For females living with dystrophinopathy (the spectrum of diseases caused by mutations in the DMD gene), the disorder has not been historically characterized effectively. To address this need, PPMD provided a grant to Nationwide Children’s…

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September 14, 2020

cTAP Study Shows Real-World, Natural History Data Comparable To Placebo Data From Trials in Duchenne

The Collaborative Trajectory Analysis Project (cTAP) announced results of a study looking at real world data and natural history data and comparing it to placebo arm data from past clinical trials. The goal of this…

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September 14, 2020

Resilience Is Strength: Thank You for Fueling Our Fight to End Duchenne

As we celebrate the resiliency of our community this week as part of Duchenne Action Month, I have been reflecting upon all that we continue to accomplish, even in this time that is anything but…

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August 24, 2020

Learnings from PPMD’s COVID-19 Pandemic Survey

In spring 2020, Parent Project Muscular Dystrophy (PPMD) released a survey to better understand the patient experience with care, trials, and access to approved therapies during the COVID-19 pandemic. Thank you to everyone who contributed…

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August 20, 2020

PPMD’s Duchenne Newborn Screening Pilot in the Spotlight

PPMD’s Newborn Screening Pilot was recently highlighted at the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) meeting. The ACHDNC advises the US Department of Health and Human Services Secretary about which conditions…

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August 19, 2020

PPMD & Duchenne Parent Project NL Support Duchenne-Specific Submissions to Journal of Neuromuscular Disease

PPMD is proud to join our friends at Duchenne Parent Project NL in supporting the Duchenne-specific submissions to the Journal of Neuromuscular Diseases exploring preclinical and clinical studies that might not have met expectation. Of…

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August 13, 2020

2020 #PPMDConference Presentations

2020 PPMD Annual Conference Presentations JULY 22 – JULY 25, 2020 | Virtual Conference PPMD’s first Virtual Annual Conference was incredible with nearly 2500 families, care providers, researchers, scientists, and industry partners joining us for…

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August 6, 2020

Have You Participated in a Clinical Trial That Was Terminated?

In an effort to learn more about the patient and family experience around clinical trials that have stopped or were terminated, PPMD and Duchenne UK have collaborated on a survey to learn more about your…

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July 29, 2020

PPMD Announces Pediatric Certified Duchenne Care Center, Akron Children’s Hospital

Today Parent Project Muscular Dystrophy (PPMD) announced the expansion of our renowned Certified Duchenne Care Center Program (CDCCP) with the certification of the clinic at Akron Children’s Hospital (Akron Children’s) in Akron, Ohio. Rachel Schrader,…

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