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…

Learn More

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…

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

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…

Learn More

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…

Learn More

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…

Learn More