Advocacy Rally in Washington D.C. for Duchenne Muscular Dystrophy Reforms

A United Front for Duchenne Advocacy in Washington D.C.

On March 10, 2025, over 150 dedicated advocates for Duchenne muscular dystrophy gathered in the heart of Washington D.C. for the Parent Project Muscular Dystrophy (PPMD) Advocacy Conference. This annual event, now in its 23rd year, serves as a platform for families affected by Duchenne to meet with Congressional leaders and urge them to advance legislation that could significantly impact their lives.

The conference, held from March 9 to 11, aims to consolidate efforts to address Duchenne muscular dystrophy, a progressive genetic disorder that gradually leads to muscle degeneration. Pat Furlong, the founding president and CEO of PPMD, expressed gratitude for the unwavering commitment of the advocates. According to Furlong, "Our community has secured critical policy victories that are transforming the lives of those affected by Duchenne and Becker muscular dystrophy. These achievements stem from the tireless efforts of our advocates who work hard for bipartisan legislative support."

The agenda for the 2025 conference emphasizes securing continued support for vital Duchenne research and healthcare programs. The advocates will petition for increased funding for initiatives at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense's medical research components.

One focus of this year’s advocacy involves exploring the effectiveness of add-on and sequential therapies in providing better outcomes for patients. This entails improving clinical data collection and addressing the significant unmet medical needs of individuals living with Duchenne. By highlighting these issues, PPMD aims to ensure that appropriations are allocated where they matter most, allowing for better resource utilization in research and treatment reproduction.

PPMD's advocacy has already yielded impressive outcomes, including securing over $800 million in funding for Duchenne-related programs across NIH, CDC, and DoD channels. The establishment of a standard of care for patients diagnosed with Duchenne has led to enhancements in both the quality of life and lifespan for these individuals. In addition, the organization is proud to report an expanding drug development pipeline, with over 40 companies now pursuing therapies tailored for Duchenne.

Furlong remarked on the resilience of the advocate community at the conference, stating, "I'm thankful for the work of our dedicated Duchenne and Becker advocates. The 2025 Advocacy Conference will not only celebrate our ongoing successes but also provide a fresh impetus to continue the fight against Duchenne muscular dystrophy."

The Parent Project Muscular Dystrophy plays a pivotal role in leading the fight against Duchenne, striving for optimal care standards. They ensure that every affected family has access to expert healthcare providers and cutting-edge treatments. Furthermore, they are committed to creating a supportive community and investing in both current treatment solutions and future research promising benefits for the next generation.

In conclusion, PPMD’s advocacy efforts have led to critical achievements and have secured substantial funding, allowing for meaningful advancements in the fight against Duchenne muscular dystrophy. As the advocates unite in Washington D.C., their passion continues to resonate, reaffirming their commitment to changing lives and ultimately striving towards a future where Duchenne is no longer a debilitating condition.

To get involved or learn more about the fight against Duchenne, visit EndDuchenne.org and follow PPMD across various social media platforms.