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Register for the 2014 Advocacy Conference (Feb 23-25)

You are invited to join us in Washington (February 23-25) for what is going to be another critical year in Duchenne advocacy. As you know our efforts last year were focused on collecting cosponsors for the MD-CARE Act (MDCA) reauthorization. To date we stand at 77 cosponsors in the House and 17 in the Senate. With Congress not taking up the legislation in 2013 we maintain these cosponsors and need to continue to add to our numbers in 2014 in the hopes to move the bill to committee action.


Our advocacy agenda

While the MDCA will be the centerpiece of our agenda, the 2014 Advocacy Conference (Feb 23-25) will not just focus on the legislation. We plan to hold a meeting on the morning of Monday, February 24th to further our conversation from the recent Duchenne Policy Forum in December. As you are aware, the Duchenne community pledged to write draft guidance on Duchenne for the FDA, we’d like to update the community on the progress of that effort as well as re-engage with the community on the plan.

Also for this year, we will be holding a Congressional briefing on the MDCA on Tuesday February 25th, highlighting the progress made to date because of the bill, the impact of the Wellstone Centers of Excellence, and explain the current landscape where we have some real potential therapies getting closer to approval. We must continue to stress the urgency for getting therapies approved.

This is a pivotal moment in Duchenne’s history and in this time of austerity measures and other cutbacks by Congress we MUST keep Duchenne on the front lines of agency priorities. The return on investment to date has been extraordinary- years added to the lifespan, $500 million invested into the muscular dystrophies (over $250 million of that Duchenne specific), several therapies in late stage development, and industry and the research community galvanized.

We hope to see you all in DC!

Let me know if you have any questions.

 

We will once again have activities for those Advocates unable to make it to Washington. Be on the lookout for that call to action so you can share with your friends and family.

Hotel information

Marriott Wardman Park Hotel I 2660 Woodley Road, NW I Washington, DC 20008

  • Reserve a room via phone: 1-877-212-5752. Please reference Parent Project Muscular Dystrophy.
  • Reserve a room via the web
  • Rate: $215 a night


Tentative conference agenda

  • Sunday 3pm-7pm: Advocate training
  • Monday 8am- 12:30pm: Update on draft guidance development
  • Monday 1pm-5pm- Advocate hill visits
  • Tuesday 9am-5pm- Advocate hill visits

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