Today, for the first time since 2020, PPMD Advocates are back in person in Washington, DC to make their voices heard in the fight to end Duchenne!
Over the next two days, more than 130 advocates — people with Duchenne, parents, siblings, grandparents, and other family members and friends will be participating in meetings with Congressional offices, urging them to support vital efforts that will support continued progress for our community. We need YOU to take action today to reinforce our message to Congress from home.
Send a message to your House and Senate Members today and urge them to continue making Duchenne patient care, public health, and research a top priority.Take Action >
What are we asking Congress to do?
This year’s request to Congress is broken into two parts. We are asking members of the House and Senate to:
ASK #1 SIGN DUCHENNE FUNDING LETTER
The annual Duchenne appropriations letter is the single most important tool that helps make sure the federal government continues to prioritize Duchenne and muscular dystrophy research and public health programs.
This year’s funding letter requests the following:
- $8 million in funding for Muscular Dystrophy related programs at the Centers for Disease Control and Prevention (CDC).
- $15 million in funding for the Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMRP) for Duchenne research.
ASK #2 COSPONSOR BENEFIT (S. 526/H.R. 1092)
We ask that Senators and Members of Congress support the bipartisan BENEFIT Act, S. 526 led by Sens. Wicker (R-MS) and Klobuchar (D-MN) in the Senate and H.R. 1092 led by Representatives Matsui (D-CA) and Wenstrup (R-OH) in the House.
- This legislation builds on prior laws and will make sure patient engagement information is fully considered as part of the FDA benefit-risk framework, by requiring FDA to disclose how they use or incorporate patient experience data in the review of new therapies.
- Patient Experience Data is data that is collected from patients and families with the intention to provide information about patients’ experiences with a disease or condition, including the impact of the disease or condition or related therapy or, and patient preferences for treatments.