Add Your Voice to the Historic Compass Meeting

There are hardly words to capture the impact our unified community had on Monday. We had traveled from all over the nation to convene with federal policymakers, industry partners, and payers for the Duchenne Patient-Focused Compass Meeting: Navigating our Pathway Forward. Nested within PPMD’s Annual Advocacy Conference, the meeting was comprised of panels and presentations with Duchenne community members (patients and caregivers) and explored ‘living with Duchenne’; clinical trial and therapeutic experiences; and access to services, supports, and approved therapies across the Duchenne spectrum.

 

Join the Conversation

The purpose of this meeting was to come together to identify areas of priority for continued engagement with our federal partners, as well as to inform our ongoing work with our industry partners and payers. We will be publishing a full meeting report to be shared with each of these stakeholder groups and would like to invite all Duchenne community members who have not yet had the opportunity, to participate in the survey so that your voice can be included. If you did not participate on Monday, please take a few minutes to ensure that the data about patient and caregiver perspectives and experiences include your experience. The surveys will remain open until March 24, 2018.


Please answer polling questions from the survey that fits you/your family. We ask that only one member from each of your families completes the polling questions or if you have a son over the age of 18 one parent AND your adult son can both participate.

 

A Historic Day

Twenty members of our community delivered poignant testimony. Each person who spoke articulately described their family’s current experience along the Duchenne journey and highlighted opportunities for policy improvements. The panel presentations were followed by series of surveys that included opportunities for all community members’ voices and experiences to be included in the day’s proceedings and the report that will follow. As a community, we then built on the foundation laid through the panel testimony through facilitated discussion.

 

I simply cannot adequately describe how what transpired on Monday, so I invite you to view it for yourself (you can also watch each individual segment at the bottom of this page):

 

 

In preparing for this meeting, PPMD invited all of the Duchenne community foundation partners to join the Community Advisory Board (CAB) for the meeting. We were thrilled to work alongside our partners on such an impactful effort and are grateful to the 14 Duchenne foundations that comprise the Duchenne Patient-Focused Compass Meeting CAB.

 

  • Best Day Ever Foundation
  • Coalition Duchenne
  • Foundation for a Future
  • Foundation to Eradicate Duchenne (FED)
  • Hope for Gus
  • Hope for Javier
  • JB’s Keys
  • Jett Foundation
  • Little Hercules Foundation
  • Powers Promise
  • Ryan’s Quest
  • Team Joseph
  • Walking Strong
  • Zach Heger Foundation

 

As I said when the meeting concluded – overwhelmed by the power of the day, standing next to Janet Woodcock (director of the Center for Drug Evaluation and Research (CDER) ) who had just delivered comments on behalf of FDA – and looked out on our powerful community…“Hope lives here.”

Opening Remarks, Overview of the Day, and Demographics and About Polling

 

Panel I - Early Journey & Elementary Years, Polling, and Audience Discussion

Panel II - Tween Teen Years, Polling, and Audience Discussion

Panel III - Lived Experience of the Family and Polling

Panel IV - Duchenne Becker Through the Adult Lens, Polling, and Audience Discussion

FDA Insights and Closing Remarks

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