November 19, 2018

PPMD 2018 Annual Conference – Polling Report

The 2018 PPMD Annual Conference provided a unique opportunity to conduct live polling of those joining us, including those joining in person and those joining virtually from home. The following report (download) provides the data…

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November 5, 2018

Calling All Adults with Duchenne & Becker MD: Join the 2019 PPMD Adult Advisory Committee!

Been looking for a way to engage with the community a bit more? Have personal experience that you’d like to see be better reflected in national policy and program efforts? Interested in serving as a…

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October 2, 2018

Advocacy Matters! Duchenne Community Requests Included in 2019 Federal Budget

Last week, the President signed the FY19 Labor Health and Human Services funding bill which included nearly all provisions advocated by this community early in the year. Your calls, your emails, your face to face…

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October 1, 2018

New Duchenne/Becker ICD Code in Effect Today — G71.01

Today at 12:01 AM  – while most of us were sound asleep – the International Classification of Diseases (ICD) code for Duchenne/Becker muscular dystrophy changed.  Previously, Duchenne muscular dystrophy was classified among a broad category…

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September 26, 2018

PPMD Continues Commitment to Duchenne Newborn Screening through Launch of Pilot in New York State

– PPMD Continues Commitment to U.S. Duchenne Newborn Screening Program – For the last 4 years, PPMD has been leading a national effort to build a Newborn Screening (NBS) infrastructure for Duchenne in the U.S. aimed…

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September 17, 2018

PPMD’s Ryan Fischer Joins the Muscular Dystrophy Coordinating Committee (MDCC)

When our community first came together with our Congressional champions in 1999 to carve a path forward for our Duchenne community, among the priorities we had was for all federal agencies that impacted our community…

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August 23, 2018

Overview: Access to Unapproved Investigational Drugs in the U.S.

Overview: Access to Unapproved Investigational Drugs in the U.S.* Like you, PPMD has had many questions about the way we can access UNAPPROVED investigational therapies in Duchenne. Expanded access, compassionate use, Right to Try –…

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August 22, 2018

Go Casual for World Duchenne Awareness Day!

This year, celebrate World Duchenne Awareness Day on September 7 by hosting a Jeans Day at your school, group or office! Raise even more funds by getting your employer to match all donations that come in. You…

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June 19, 2018

FDA’s Patient-Focused Drug Development Initiative: What Have We Learned?

PPMD’s SVP of Legislation and Public Policy, Annie Kennedy, joined a distinguished panel discussion convened by FasterCures about the impact of Patient Focused Drug Development on the Duchenne community and how it has become a…

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April 16, 2018

70 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

We are pleased to report our final numbers for the FY19 letters. In total, 19 Senators signed onto the Senate FY19 letter, joining 51 members of the House. That makes a solid 70 members of Congress (House…

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