Update from the PAAC: “We’re all hooked into one world now!”

On January 15 of this year we introduced you to an incredibly special group of people, PPMD’s Adult Advisory Committee. The PPMD Adult Advisory Council (PAAC) serves to ensure that the voices of adults living with Duchenne and Becker muscular dystrophy are reflected in PPMD’s legislative, policy, and program activities. PAAC members serve in a formal advisory capacity for their respective term and maintain leadership over a PAAC initiative throughout that term; PAAC initiatives are determined by the PAAC membership and PPMD Executive Team.

The PAAC held their first in-person meeting on February 21 right at the start of PPMD’s Annual Advocacy Conference. There aren’t words to describe the excitement, passion, and commitment felt that day and throughout the conference.

But it wasn’t just a bunch of talk! Since that meeting, the PAAC has:

  • Submitted comment on the MDCC Action Plan for the record.
  • Provided input for a Transitions Guideline tool being submitted for publication in the Annals of Neurology.
  • Helped to design PPMD’s national assessment of patient and caregiver preferences in function as applied to robotics. Click here to participate in the survey.
  • Visited Hill offices supporting PPMD’s Advocacy Agenda, including MD-CARE Act implementation.
  • Ben Cumbo testified at a Congressional Briefing on behalf of the PAAC. 
  • Buddy’s mom testified at another Congressional Briefing on behalf of PPMD around the Social Security barriers that the PAAC has identified as a key policy issue.
  • Two members have been enlisted to serve as working group members on the CDC Care Considerations Expansion effort.
  • One member has agreed to be nominated by PPMD as a public member of the federal Muscular Dystrophy Coordinating Committee.
  • Colin Rensch was featured in press around his involvement in the PAAC and Hill events – helping us to raise awareness of Duchenne and the issues that we are working on.
  • Two members will be joining me at the annual Disability Policy Summit in DC on April 13-15, sponsored by AAPD and the Arc.
  • Preparations have begun for PPMD’s pre-conference transitions meeting to take place June 17-18 at the Annual Connect Conference.
  • Started blogging! Get to know our PAAC members even better in their latest blogs. Read their stories and find out where their passions lie. Plus get a sense of what this group plans to accomplish. It’s beyond inspiring:

 

And that’s just the start. Each member brings a long list of talents and as we continue to work together as a committee and with the broader community, we look forward to seeing everything this team has to offer and the power of these connections. As Buddy Cassidy said in his blog, “we’re all hooked into one world now!”

This first update comes from me, but I hope going forward to have the “PAAC Men” themselves tell you what they’ve got going on.

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