#United States #Washington #PPMD #Duchenne Advocacy #MD-CARE Act

Advocates Rally in Washington for Duchenne and Becker Policy

On March 9, 2026, a spirited gathering of over 120 advocates is taking place on Capitol Hill, organized by the Parent Project Muscular Dystrophy (PPMD), a prominent U.S. non-profit dedicated to improving care, research, and advocacy for Duchenne and Becker muscular dystrophies. This annual event coincides with the 25th anniversary of the Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Act, marking a significant milestone in the journey towards better care for those affected by these conditions.

Katherine Beaverson, the Chief Executive Officer of PPMD, expressed gratitude for the efforts of community activists, stating, "Together, our community has secured victories advancing critical policies that are transforming the lives of those affected by Duchenne and Becker muscular dystrophy. These accomplishments reflect the dedication of thousands of PPMD advocates who continue to champion bipartisan solutions."

A key highlight of the day is a special briefing on the MD-CARE Act, emphasizing its impact over the past quarter of a century. The act established a coordinated federal framework aimed at enhancing muscular dystrophy research, therapeutic development, and patient care. Pat Furlong, PPMD's founding president, remarked on the transformational role this legislation has played, reinforcing the importance of collaboration between patients, advocates, researchers, and lawmakers.

"Twenty-five years ago, PPMD played an essential role in passing the MD-CARE Act, which continues to positively impact the community today," Furlong noted. "This anniversary is not just a celebration; it calls us to strengthen and expand upon the bipartisan legacy that has been established."

The event not only serves as a platform to celebrate past accomplishments but also to advocate for the future. This year, PPMD emphasizes the necessity for sustained federal support for Duchenne research, seeking to ensure ongoing appropriations for critical programs at major institutions including the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DoD).

"We are thankful for the work of our dedicated Duchenne and Becker advocates who have made success in this community possible, as well as congressional champions who help accelerate research while providing equitable access to therapies," Beaverson stated.

The 2026 Advocacy Conference will build momentum for ongoing efforts to end Duchenne and Becker muscular dystrophy. It will also feature a reception for lawmakers and advocates, further fostering relationships and recognizing those who have championed significant policies advocating for individuals living with these conditions.

Parent Project Muscular Dystrophy (PPMD) remains staunchly committed to its mission: ensuring optimal care standards for families, engaging in impactful research, and advocating for significant funding that has already secured hundreds of millions of dollars. Moreover, the organization celebrates eight FDA approvals for treatments benefiting current and future generations of Duchenne patients.

Founded in 1994, PPMD has made substantial strides toward aiding those affected by Duchenne, dedicating itself to the cause tirelessly. With a clear vision and determination, the organization seeks to change the narrative for Duchenne patients and their families, affirming, "We will not rest until we end Duchenne for every single person affected by this disease."

Advocates worldwide are encouraged to join this ongoing fight against Duchenne. To stay connected and informed, visit EndDuchenne.org and follow PPMD on social media platforms like Facebook, Twitter, Instagram, and YouTube.