Advocates Unite in Washington to Advance Duchenne and Becker Policy, Mark 25th Anniversary of MD-CARE Act

WASHINGTON, March 9, 2026 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), the leading U.S. non-profit driving Duchenne and Becker muscular dystrophy care, research, and advocacy efforts, with a group of more than 120 advocates, will head to Capitol Hill today to meet with Congressional leaders during this year's annual PPMD Advocacy Conference.

"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," said Katherine Beaverson, MS, PPMD's Chief Executive Officer. "We are deeply grateful to the advocates who take time from their busy lives to come to Washington, D.C., and share their powerful experiences with lawmakers on Capitol Hill."

Pat Furlong, PPMD's Founding President, emphasized the significance of the 25th anniversary of the Muscular Dystrophy Community Assistance, Research, and Education (MD-CARE) Act, a milestone being recognized during this year's Advocacy Conference, stating, "Twenty-five years ago, PPMD and the Duchenne and Becker community played a vital role in passing the MD-CARE Act, which established a coordinated federal framework to advance muscular dystrophy research, care, and therapeutic development. Its lasting impact is a testament to what is possible when patients, advocates, researchers, and policymakers work together. As we mark this milestone, we remain committed to strengthening and building on this bipartisan legacy to accelerate progress for our community."

As part of the conference program, PPMD is hosting a MD-CARE Act briefing on Capitol Hill highlighting the Act's impact over the past quarter century and the importance of continued federal leadership in improving outcomes for individuals living with Duchenne, Becker, and other muscular dystrophies. The conference will also feature a congressional reception bringing together lawmakers, advocates, and key partners to celebrate progress and recognize champions who have supported policies advancing research, care, and access for individuals living with Duchenne and Becker muscular dystrophy.

The 2026 PPMD congressional policy agenda will focus on­ urging lawmakers to continue supporting critical Duchenne research and public health programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and the Department of Defense (DoD) medical research function by supporting Fiscal Year 2027 Duchenne appropriations requests.

"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 advancing equitable access to therapies, strengthening neuromuscular care, and sustaining the federal research programs families rely on. 2026's Advocacy Conference will provide an excellent opportunity to build on the momentum we have generated over the years and continue our fight to end Duchenne and Becker," Beaverson said.

About Parent Project Muscular Dystrophy

Duchenne is a genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.

We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won eight FDA approvals.

Everything we do—and everything we have done since our founding in 1994—helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.

SOURCE Parent Project Muscular Dystrophy (PPMD)