PPMD’S 2021 VIRTUAL ADVOCACY CONFERENCE

Virtual Fly-In: Wednesday, March 10

web_event_2021advocacy_virtual_01.png

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

Join us for PPMD’s 2021 Advocacy Conference: Virtual Fly-In on Wednesday, March 10. 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.

Basic Agenda

  • Online Training (Zoom Session)
    You can choose one of two options: Monday, March 1 between 3 PM - 4 PM ET or Tuesday, March 2 between 6 PM - 7 PM ET. These meetings will also be recorded.
  • Virtual Meetings with Members of Congress
    Wednesday, March 10 (specific appointment times to be set)

WATCH: 20 Years of PPMD Advocacy in Action

2021 marks the 20th Anniversary of the MD-CARE Act. This landmark legislation 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.

Never Advocated Before?

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

Zoom Training Sessions

PPMD will lead our advocates through online educational training sessions on Monday, March 1 between 3 PM - 4 PM ET or Tuesday, March 2 between 6 PM - 7 PM ET (choose one while registering) to ensure everyone understands this year’s message and call to action. Once all advocates, both new and returning, are comfortable with the messaging and new virtual format, delegation groups will be assigned and appointment times will be set. These training sessions will also be recorded.

Other Questions?

Please do not hesitate to email advocacy@parentprojectmd.org with any questions.

Register

Registration deadline: Friday, March 5. There is no fee for this virtual event, however registration is required.