Blog

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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….

Learn More

February 1, 2019

Register Today for PPMD’s 2019 Advocacy Conference!

The PPMD Advocacy Conference registration is live! Join us March 3-5 in Washington DC to advocate for Duchenne directly with Members of Congress. Our community’s presence in Washington has been critical in helping to move the…

Learn More

December 13, 2018

ICER Announces the Review of Duchenne Products – What Does This Mean?

Thanks to decades of advocacy, funding and innovation, our healthcare landscape is rapidly changing. As new therapies emerge into the marketplace, patients, providers, and payers are faced with challenges as to how to discern which…

Learn More

Join Our Mailing List