by: Parent Project Muscular Dystrophy
On Thursday, September 5, 2024, PPMD hosted a special webinar, “PPMD Advocacy: Raising Our Voices in 2024 and Beyond,” bringing together advocates to reflect on PPMD’s advocacy efforts in our 30th anniversary year and discuss how we continue to drive policy change for those living with Duchenne and Becker muscular dystrophy.
Moderated by PPMD’s Senior Director of Advocacy, Lauren Stanford, the event celebrated recent milestones in PPMD’s federal and state efforts and emphasized the power of collective action:
- Joel Wood, Duchenne parent and President of the Foundation to Eradicate Duchenne, shared his personal journey in advocating for policy changes that impact research and care. He emphasized the importance of continued advocacy to secure additional funding and progress in legislative priorities.
- H.E. Mr. Tareq Albanai, Kuwait’s Permanent Representative to the United Nations, discussed the importance of global advocacy in ensuring the rights and inclusion of the Duchenne community worldwide. Notably these efforts include the successful passage of the first-ever UN General Assembly resolution designating September 7th as World Duchenne Awareness Day, as well as ongoing initiatives to integrate rare diseases into UN resolutions.
- Alan Chaulet, a member of PPMD’s Adult Advisory Committee and Vice President of All Wheels Up, discussed significant progress in making air travel more accessible for individuals who use wheelchairs. He highlighted key legislative and advocacy achievements, including the FAA Reauthorization Act.
- Marit Sivertson, another Duchenne parent and advocate, emphasized the critical need for expanded newborn screening programs and highlighted PPMD’s Newborn Screening Action Center as a vital resource for advocates.
- Marielena McGuire, Program Manager for the Duchenne Muscular Dystrophy Research Program under the Congressionally Directed Medical Research Programs, provided an update on the Department of Defense’s role in funding innovative research in Duchenne and the progress that has been made since the program’s inception.
As we mark World Duchenne Awareness Day on September 7th, and continue through Duchenne Action Month this September, we encourage everyone to get involved in PPMD’s advocacy efforts. Take action today by completing our FY 2025 Appropriations Action Alert to help secure critical funding for Duchenne research and care programs.
Take Action >Together, we can raise our voices, take action, and continue fighting for every future!
