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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November 3, 2020

PPMD Urges Congress To Make It Easier for Providers To Treat Children From Other State Medicaid Programs

PPMD joined 22 prominent Organizations and Institutions in a letter urging Congress to enact the Accelerating Kids’ Access to Care Act (H.R. 5900 and S. 4717) by the end of the current Congress. This bipartisan…

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October 30, 2020

Calling All Adults with Duchenne & Becker: Join the 2021 PPMD Adult Advisory Committee!

Been looking for a way to engage with the community a bit more? Have a personal experience that you would like to share with the larger community or federal and state advocacy efforts? Interested in…

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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 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 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

PPMD Signs Onto Letter Urging Congress to Protect Immunocompromised Patients During the Pandemic

PPMD joined dozens of patient organizations in a letter to Congress urging them to protect immunocompromised patients during the pandemic. Americans living with compromised immune systems have routinely taken precautions in order to avoid becoming…

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July 7, 2020

PPMD Signs Onto Telehealth Letter to Congress

PPMD is proud to have joined 340 organizations in signing a letter urging Congressional leaders to make telehealth flexibilities created during the COVID-19 pandemic, permanent. The letter sent a powerful message to Congress outlining the…

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April 17, 2020

PPMD Signs Onto Letter Urging Guidance to Prohibit Discrimination During Medical Rationing

Today, PPMD joined over 400 patient organizations in a letter led by the American Association of People with Disabilities (AAPD) urging the Department of Health and Human Services (HHS) to issue further guidance addressing the…

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April 10, 2020

Thank you for always being our strength

Thank you for always being our strength Re·sil·ience: (noun) the capacity to recover quickly from difficulties; strength. Our Duchenne community is the definition of resilience. And we have never had that resilience challenged like we…

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