January 12, 2021 / Advocacy

Join PPMD’s 20th Anniversary of Advocacy in Action

2021 marks the 20th Anniversary of the MD-CARE Act, landmark legislation that launched coordinated federal efforts to confront Duchenne and Becker muscular dystrophy through research, public health, and quality care initiatives.

This congressionally directed federal investment has contributed to significant progress made to date in understanding, diagnosing, and treating Duchenne.

However, our work is not done — we must double down on these efforts to ultimately defeat this devastating disease.

Virtual Town Hall on Facebook Live | February 3

To commemorate the passage of the MD-CARE Act, PPMD will host a Virtual Town Hall on Wednesday, February 3, 1 PM – 4 PM ET to look back on past accomplishments and progress made possible by Duchenne advocates, as well as looking ahead at work yet to be done in this new era.

The agenda will feature panel discussions by NIH, FDA, and CDC leadership, personal reflections from our Duchenne Senate and House Champions, as well as reflections from community members, families and friends who have been influential in our progress in Washington D.C.

You won’t want to miss this informative and inspiring event open for all to join!

RSVP on Facebook >

2021 Advocacy Conference: Virtual Fly-In | March 10

Want to be part of history? Want to contribute to future progress in understanding, diagnosing, and treating Duchenne?

Join us on Wednesday, March 10 for PPMD’s 2021 Advocacy Conference: Virtual Fly-In. While we might not be able to be face-to-face in Washington, DC this year, we are still able to make our voices heard.

Over the last 20 years, Duchenne Advocacy has resulted in…

  • Over $600 million in funding for Duchenne related programs at the National Institutes of Health, Center for Disease Control, and Department of Defense.
  • A standard of care established and recently updated for all those diagnosed with Duchenne, which has markedly improved the quality of life and extended lifespan.
  • An ever growing Duchenne drug development pipeline with over 40 companies developing drugs for Duchenne.

There is no travel or financial expense associated with this virtual event. Only your time and energy are needed to join a movement and help keep Duchenne as a priority in our legislative environment.

Never Advocated Before?

No problem! 25 percent of our attendees every year are brand new advocates. With this year’s virtual format, now is the perfect time to dip your toe into the advocacy waters! PPMD will get you well prepared with online educational training sessions ahead of your meetings.

Register >

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