May 16, 2019

PPMD Signs on to Defense Health Research Letters

PPMD is proud to serve as a member of the Defense Health Research Consortium. Last week, letters were sent to both houses of Congress asking for their continued support for the critical and highly successful…

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May 14, 2019

PPMD Hosts Duchenne Clinical Outcomes Workshop

PPMD has been working for many years to engage critical policy makers and stakeholders within the regulatory and access environments.  While we have learned a great deal over the past two years as we have…

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May 3, 2019

Newborn Screening Saves Lives Reauthorization Act Introduced in House of Representatives

Yesterday, the Newborn Screening Saves Lives Reauthorization Act was introduced in the House of Representatives. PPMD is extremely proud to be a leading coalition voice in this milestone legislation aimed at eliminating preventable newborn deaths…

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April 11, 2019

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

As a result of 143 meetings with Members of Congress in Washington DC, and over 2,000 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne…

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March 22, 2019

Take Action before House and Senate Letters Close

Take Action before House and Senate Letters Close If you haven’t done so already please contact your Members of Congress – today – and ask them to support the FY 2020 Duchenne Appropriations Request. The…

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March 13, 2019

Updates from PPMD’s 2019 Gene Therapy Policy Forum

During PPMD’s Annual Advocacy Conference we had the opportunity to host a Gene Therapy Forum with expert clinicians, researchers, industry stakeholders, and government representatives taking part in the discussion. This meeting continues PPMD’s in-depth look…

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March 5, 2019

Action Alert! Continue Progress in the Fight Against Duchenne

Thanks to the work of our Duchenne community over the past two decades, Congress has regularly supported important programs and policies to advance research, public health, drug development, and other Duchenne priorities. To ensure that we…

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February 28, 2019

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

Parent Project Muscular Dystrophy (PPMD) heads to Washington, D.C., March 3–5, for their annual Advocacy Conference. Over 100 families are expected to join PPMD on Capitol Hill to help inform Members of Congress about the…

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February 25, 2019

Rehabilitation, Therapy and Appeal Letters for Medical Equipment

Assistive devices and adaptive equipment are supposed to make life easier. So why is getting this equipment so hard? Every month, PPMD members get notes from parents and rehabilitation teams who are frustrated with the…

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February 5, 2019

PPMD to Host Gene Therapy Policy Forum on March 4, 2019

PPMD is excited to announce that this year’s action-packed Advocacy Conference, March 3-5 2019 will include a special Gene Therapy Policy Forum on Monday, March 4 from 9am to 3pm at The Mayflower Hotel in D.C….

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