Blog

October 2, 2019

Can Girls Have Duchenne?

PPMD is often asked the question: Can girls have Duchenne? There are a number of Facebook groups focused on female carriers. Discussions and questions arise around why some female carriers of Duchenne have symptoms while…

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October 1, 2019

First Baby Tested Via Parent Project Muscular Dystrophy’s Newborn Screening Pilot

Today, our community’s collective efforts have led to an incredible milestone for PPMD’s Duchenne Newborn Screening Pilot in New York State. Today, the first babies are being SCREENED for Duchenne. This is a significant milestone…

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September 16, 2019

PPMD Unveils Care Materials & Remote Tour Stop in SPANISH

Each year during Duchenne Action Month, PPMD reminds our families to download our comprehensive care materials, including critical emergency information. This information is especially important as kids head back to school to help educate school staff….

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September 9, 2019

Decode Duchenne: Five Years of Free Genetic Testing

For over five years, PPMD has been proud to offer free genetic testing, counseling support and education through Decode Duchenne. This program is collaborative partnership between PPMD, industry partners Sarepta Therapeutics and PTC Therapeutics and…

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PPMD Announces Children’s Hospital of Richmond at VCU as 26th Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Children’s Hospital of Richmond at VCU (CHoR) the 26th Certified Duchenne Care Center (CDCC). This expanding certification program of elite centers, created in 2014 as part of PPMD’s…

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2019 #PPMDConference Presentations

2019 PPMD Annual Conference Resources & Recordings JUNE 27 – JUNE 29, 2019 | Orlando, Florida Thank you doesn’t begin to express our gratitude to everyone who participated in our 25th Annual Conference in Orlando,…

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NEW Resource! Large Weatherproof Duchenne Emergency Information Cards for Wheelchairs, Backpacks

In our ongoing effort to ensure that you and your family are prepared in any situation, PPMD is excited to announce the release of new large emergency cards — perfect for attaching to wheelchairs, scooters,…

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PPMD: Your Strength, Your Family

PPMD: Your Strength, Your Family I had no intention of being part of the Duchenne community this long. When we started PPMD in 1994, I naively thought we would have a cure and I would…

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Primary & Emergency Care in Duchenne

One of the first questions parents are asked when they become pregnant is, “Who is your pediatrician?” Your pediatric primary care provider is so important that they almost a part of your family – they…

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Summer Camps and Immunizations for Children with Duchenne

As the school year wraps up, many families are beginning to prepare for summer activities. We have recently received questions about vaccination requirements, especially if parents are planning to send their child to camp. Specifically,…

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