Blog

PPMD Announces First Patients Consented into EHR Study!

PPMD is excited to announce the launch of our new Electronic Health Record (EHR) Study, which will extract data from several of our Certified Duchenne Care Centers across the country, with the first patients now…

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The Heart is a Muscle Too: Developing an Action Plan for Cardiac Care

Someone says, “wait and see,” while someone else says, “start medication early.” Someone recommends cardiac MRI, while someone else suggests, “echo is probably fine.” All the while, new technology abounds, new drugs come to market,…

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Carrier Care: Driving Improvements & Breaking Down Barriers

“Are you a carrier?,” they write in the hushed tones of private groups on social media, attaching anxious face and blue heart emojis in our new lexicon of connection and permission to express. What they…

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NIH Hosts Working Group to Better Understand Immune Response in Gene Therapy Trials (Webinar Recording)

Gene therapy, as we have often discussed, is still in its early days; meaning there are lots of lessons to be learned and new challenges that arise to ensuring all patients can one day have…

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PPMD Convenes 80+ Expert Cardiologists & Professionals for Duchenne Cardiac Care Meeting

PPMD is spending this week joined by 80+ expert cardiologists, key neuromuscular providers, members of the FDA and NIH, and industry partners to discuss cardiac care in Duchenne. We all know that the heart is…

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February 3, 2022

New Study to Understand Duchenne Patients’ and Caregivers’ Attitudes Towards Gene Therapy Launched

In a new transatlantic collaboration, Parent Project Muscular Dystrophy (PPMD) and Duchenne UK (DUK), the DMD Hub, and RTI International are conducting a study to explore attitudes towards gene therapy and gene editing from adults…

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January 26, 2022

Save the Date for PPMD’s Upcoming Events!

PPMD is excited to announce our 2022 schedule of educational events, including PPMD’s Annual Conference (hybrid in-person & virtual meeting), End Duchenne Tour (both in-person and virtual stops), and Advocacy Conference (virtual). New this year, PPMD will host The Power of…

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January 4, 2022

Thank YOU for Joining the Power of Us!

I am grateful for your generosity this year and excited to announce that we have reached our goal of providing supplemental funding to the Wellstone Muscular Dystrophy Cooperative Research Centers. The Power of Us is…

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December 30, 2021

Tomorrow is the last chance to double your gift

I can’t believe it’s almost the beginning of a new year. In about a week, I will lace up my sneakers once again and join my chosen family for another Walt Disney World Marathon Weekend….

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December 26, 2021

Double the Impact of Your Gift Today!

Once Duchenne enters your life, you learn to be resilient even if it is against your wishes. You learn to come together to get through the tough times, even if it is with a community…

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