Blog

October 14, 2021

The Duchenne Registry has a new survey – Therapy Services!

We know that therapy services such as physical, occupational, and speech therapy are helpful to people with Duchenne and Becker throughout their lives. The new Therapy Services survey was developed to better understand who is…

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October 6, 2021

PPMD Completes Successful Pilot in Newborn Screening for Duchenne Muscular Dystrophy

PPMD’s Newborn Screening Pilot recently completed two years of ground-breaking recruitment. More than 36,000 families consented to participate and more than 36,000 babies have been screened for Duchenne Muscular Dystrophy in New York State. As…

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August 26, 2021

PPMD Invests $350,480 in Myosana Therapeutics to Support Non-Viral Gene Therapy Development

Parent Project Muscular Dystrophy is excited to announce a $350,480 programmatic investment in Myosana Therapeutics, Inc. (Myosana) to support the company’s early-stage development of a non-viral gene therapy delivery platform aiming to slow skeletal muscle…

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PPMD Begins Process to Update Community-Led Duchenne Guidance for FDA

PPMD takes every action necessary to ensure therapies are developed efficiently and that they include the voice of the community. In 2014, we came together as a community, creating and submitting to the FDA the…

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Recently Reported Updates from PPMD’s 2021 Virtual Annual Conference

PPMD’s 2021 Virtual Annual Conference: Recently Reported Updates As a new addition to PPMD’s 2021 Virtual Conference, PPMD invited industry partners to share new data with the community live during the Conference in a series…

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PPMD Is Moving to Washington, DC!

PPMD’s Main Office is Moving to Washington, DC! When Parent Project Muscular Dystrophy started in 1994, formed by a small group of parents and grandparents out of Ohio, we knew that one of our first…

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Rewatch PPMD’s 2021 Virtual Annual Conference

Did You Miss PPMD’s 2021 Virtual Annual Conference? PPMD’s 2021 Virtual Annual Conference was incredible with close to 2,000 families, care providers, researchers, scientists, and industry partners joining us for four days of informative updates…

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PPMD & Jesse’s Journey Award $172,000 (CAD) Clinical Fellowship in Duchenne Endocrinology & Bone Fragility

Parent Project Muscular Dystrophy (PPMD) and Jesse’s Journey today announced a collaborative research award of $172,000 (CAD) in support of a two-year Clinical Fellowship in Duchenne Endocrinology and Bone Fragility. The award will sponsor the fellowship of…

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Take Part in the Duchenne Steroid Patient Experience Survey

Patient experience data is a critical tool for advancing drug development in Duchenne and for regulatory decision making. Steroids have been part of care standards for over two decades, however, there is a lack of…

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C-Path Opens Access to Duchenne Regulatory Science Consortium (D-RSC) Database

PPMD is proud to be an original funder and continued supporter of the Duchenne Regulatory Science Consortium (D-RSC) database, which includes data from Duchenne clinical trials, natural history studies, and clinical data collections. With the strength…

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