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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April 6, 2020

91 Members of Congress Send Letter of Strong Support for Duchenne Priorities & Funding for Next Year’s Budget

As a result of 123 meetings with Members of Congress in Washington DC, and over 2,500 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne Fiscal Year 2021 (FY21)…

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March 16, 2020

Action Alert! Urge the Senate to Support FY2021 Duchenne Appropriations

We had great success in the House thanks to YOU with 68 House members signing onto the FY21 letter! This community sent over 1,000 messages to Congress through our Action Alert center, requesting support for…

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March 10, 2020

PPMD Leads Duchenne Community to Nation’s Capital for Annual Advocacy Conference

Parent Project Muscular Dystrophy (PPMD) heads to Washington, D.C., March 8–10, for our annual Advocacy Conference. Over 100 families are expected to join PPMD on Capitol Hill to help inform Members of Congress about the critical…

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March 9, 2020

Action Alert! Urge Congress to Support FY2021 Duchenne Appropriations

It’s that time of year again. Members of the House and Senate are working, right now, to develop and submit their policy priorities for the annual spending bills that will fund the NIH, CDC, FDA,…

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