Each year, the Duchenne and Becker muscular dystrophy community comes together in Washington, DC with a shared mission: to ensure that the voices of individuals living with Duchenne and Becker and their families are heard where policy decisions are made. This year, PPMD’s Advocacy Conference once again demonstrated the extraordinary power of community advocacy.
Families, adults living with Duchenne and Becker, clinicians, researchers, and partners from across the country gathered to share their stories, educate policymakers, and champion the federal investments that are driving real progress for our community. From Capitol Hill meetings to a powerful congressional briefing and an evening reception honoring legislative champions, the week reflected both how far we have come—and how much work remains.
Advocates Bringing the Duchenne Story to Capitol Hill
At the heart of every Advocacy Conference are the advocates themselves.
Community members from across the U.S. met with congressional offices to share their personal experiences navigating diagnosis, care, and access to emerging therapies–helping lawmakers understand the real-world impact of policy decisions and the importance of sustained federal leadership in Duchenne research and care.
Advocates highlighted the momentum in the Duchenne field while underscoring urgent needs, including access to multidisciplinary care, research for rare mutations and ultra-rare variants, and strong federal research infrastructure. Personal stories remain one of the most powerful drivers of policy change.
25 Years After the Passage of the MD-CARE Act
A Congressional Briefing on Progress and the Path Forward
During this year’s conference, PPMD hosted a congressional briefing that brought together leaders from across the Duchenne and Becker community to discuss the progress being made—and the work ahead.
Speakers reflected on how decades of federal partnership have helped transform the Duchenne and Becker landscape. Investments in research, care infrastructure, and surveillance programs have accelerated scientific discovery and improved health outcomes for individuals living with Duchenne and Becker, and continued investment is essential to ensure that every individual living with Duchenne can benefit from scientific advances.
The conversation underscored a central truth: breakthroughs happen when government, scientists, clinicians, and the patient community work together.
Honoring Congressional Champions
The week concluded with a special evening reception celebrating the bipartisan leaders in Congress who have stood alongside the Duchenne and Becker community.
During the reception, PPMD and the Foundation to Eradicate Duchenne (FED) presented the 2026 Advocacy Leadership Awards, recognizing Members of Congress who have demonstrated exceptional commitment to advancing Duchenne and Becker muscular dystrophy research, strengthening care infrastructure, and expanding access to life-changing therapies.
This year’s awards recognized Senator Roger Wicker, Senator Susan Collins, Senator Amy Klobuchar, Representative Doris Matsui, and Representative Troy Balderson, who have worked across the aisle to support the policies and programs that drive progress for families—from funding critical research initiatives to supporting legislation that accelerates therapeutic development.
Moving our Mission Forward
The 2026 Advocacy Conference was a powerful reminder of what is possible when we raise our voices together.
The Duchenne and Becker community has helped drive transformative progress over the past two decades and ensures that Duchenne and Becker remains a national priority But our work is not finished.
Members of the House and Senate will soon be working to develop and submit their policy priorities for the annual spending bills that will fund the NIH, CDC, DOD, FDA, HRSA, and other key federal agencies for FY 2027. We need you to contact your House and Senate members today and urge them to prioritize Duchenne- and Becker-focused programs and policies.
Together, we will keep pushing forward until every person living with Duchenne and Becker has access to the care, treatments, and hope they deserve.
PPMD is deeply grateful to every advocate, family member, clinician, researcher, and partner who joined us this year in the nation’s capital. Your voices—and your stories—are shaping the future.
The post Community Comes Together on Capitol Hill: A Recap of PPMD’s 2026 Advocacy Conference appeared first on Parent Project Muscular Dystrophy.