Advocates Unite in Washington D.C. to Champion Duchenne Policy Reforms

WASHINGTON, March 10, 2025 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), with a group of more than 150 advocates, will head to Capitol Hill to meet with Congressional leaders during this year's annual PPMD Advocacy Conference, taking place March 9–11. This marks the 23rd year that PPMD advocates will gather in Washington to urge Congress to advance legislation that will bring us closer to ending Duchenne.

"Our community has secured critical policy victories that are transforming the lives of those affected by Duchenne and Becker muscular dystrophy. These achievements are the result of the efforts by thousands of PPMD advocates who work tirelessly to advance bipartisan legislation," said Pat Furlong, PPMD's Founding President and CEO. "I am deeply grateful to the advocates who take time from their busy lives to come to Washington, D.C., and share their powerful stories with lawmakers on Capitol Hill."

Furlong underscored the significance of PPMD's comprehensive federal advocacy in building strong bipartisan support, stating, "PPMD has earned the trust and respect of legislators across the political spectrum. Our commitment remains steadfast: to champion the needs of our community through relentless advocacy on Capitol Hill—because our purpose unites us."

The 2025 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. This year's request will also include provisions to explore how the use of add-on and sequential therapies impacts patients, improves key clinical data collection and dissemination, and addresses the ongoing significant unmet medical need of individuals with Duchenne. Each of these requests is designed to bring more attention to Duchenne and Becker in Congress so that these medical programs are appropriately funded and provided with guidance on how best to utilize research funding.

To date, PPMD advocacy efforts have resulted in the following exceptional outcomes:

• Over $800 million in funding for Duchenne related programs at the NIH, CDC, and DoD.
• A standard of care established and recently updated for all those diagnosed with Duchenne, which has markedly improved the quality of life and extended lifespan.
• An ever-growing Duchenne drug development pipeline with over 40 companies developing therapies for Duchenne.

"I am thankful for the work of our dedicated Duchenne and Becker advocates who have made success in this community possible. 2025'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," Furlong 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)