December 11, 2020

Have Your Gift Matched to Unlock Data and Unleash Breakthroughs

This time of year, we are all looking for the perfect gift for our loved ones, but one size doesn’t fit all. This reminds me of Duchenne, where one size doesn’t fit all either. While…

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December 10, 2020

The Duchenne Registry Celebrates One Year of Data Collection in our Smartphone App!

This year has been one for the record books for many reasons, but here at PPMD we are excited to celebrate one year of data collection in The Duchenne Registry’s new smartphone app platform! Our…

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December 9, 2020

What exactly is a “Duchenne Protein Map”?

One thing we all know about Duchenne is that no matter when you or your child was diagnosed, some days we wake up and find ourselves feeling like there is still so much we need…

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November 16, 2020

Duchenne UK, MDA & PPMD Award $686,500 Grant To Develop Easier Way To Measure if New Treatments Are Working

In an unprecedented collaboration designed to speed research advances, Duchenne UK, the Muscular Dystrophy Association (MDA), and Parent Project Muscular Dystrophy (PPMD) have announced a joint grant of $686,500 to Dr. William Evans (principal investigator)…

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November 10, 2020

PPMD’s Ground-Breaking Effort: An Update After One Year of Our Newborn Screening Pilot for Duchenne

14,000 Babies Tested in Partnership with New York State and NBSTRN; Data Presented at Association of Public Health Laboratories Newborn Screening Virtual Symposium Parent Project Muscular Dystrophy (PPMD) today announced that our Newborn Screening Pilot…

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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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