PPMD is proud to announce the launch of our first state-specific Duchenne Advocacy Day in Illinois! This initiative marks a significant milestone in PPMD’s efforts to advance legislative progress for Duchenne at the state level.

PPMD has long been at the forefront of Duchenne advocacy efforts. Its annual Advocacy Conference stands as the longest-running advocacy event for a rare disease community in the United States, with over two decades of advocacy in Washington, D.C. Now, PPMD expands its advocacy efforts to the state level with the launch of its pilot state-specific advocacy initiative.

As part of PPMD’s commitment to advocating for policies that support individuals and families living with Duchenne and Becker muscular dystrophy, the organization has initiated a pilot project to focus on state-specific advocacy efforts. Illinois has been selected as the inaugural state for this initiative, with the Advocacy Day taking place on April 17, 2024.

In conjunction with the Advocacy Day, PPMD’s President & CEO, Pat Furlong, will address a press event at the Illinois State Capitol. Furlong will underscore the progress PPMD has achieved over the past 30 years, emphasizing the critical importance of newborn screening and continued research for Duchenne.

“Our goal with PPMD’s state-focused advocacy initiative is to make our initial pilot states a model for Duchenne legislative progress across the United States,” said Pat Furlong, President & CEO of Parent Project Muscular Dystrophy. “We are honored to have the opportunity to engage directly with Illinois legislators and policymakers about the importance of these legislative measures and the impact they can have on the Duchenne community.”

The Advocacy Day in Illinois will focus on championing key legislative measures, including:

• HR 636 (Rep. Robyn Gabel)/SR 820 (Sen. Laura Fine), designating September 7, 2024, as Duchenne Muscular Dystrophy Awareness Day in the State of Illinois.
• SB 3277 (Sen. Julie Morrison), which seeks to implement newborn screening for Duchenne in Illinois.
• SB 3277 (Sen. Thomas Bennett), which aims to develop mandatory protocols and best practices for providing medical guidance for Duchenne.

“The launch of this pilot project reflects our commitment to advocating for individuals and families affected by Duchenne and Becker at every level,” said Lauren Stanford, Director of Advocacy at Parent Project Muscular Dystrophy. “By focusing on state-level legislation, we can address specific needs and challenges faced by the Duchenne community in Illinois and beyond.”

Advocacy efforts at both the federal and state levels are crucial for addressing the diverse needs of the Duchenne community. While federal advocacy ensures broader policy changes and research funding, state-level advocacy allows for more targeted initiatives and solutions tailored to the specific needs of individual states. 

PPMD’s state-based advocacy pilot project includes eight states this year: Alabama, Arizona, Arkansas, Illinois, Massachusetts, Minnesota, New Mexico, and New York. PPMD aims to expand this initiative to additional states in the coming years, with the ultimate goal of driving nationwide legislative progress for Duchenne. 

The pilot project is supported by Pfizer in accordance with PPMD’s Corporate Relations Policy.

For more information about Parent Project Muscular Dystrophy and its advocacy initiatives, please visit PPMD’s website.

If you live in a pilot state and would like to learn how to get involved, please contact PPMD’s Lauren Stanford.