December 17, 2025 - WASHINGTON, D.C. – On Tuesday, U.S. Senator Susan Collins praised the decision from the Department of Health and Human Services (HHS) to approve the addition of Duchenne muscular dystrophy (DMD) to the Recommended Uniform Screening Panel (RUSP). The RUSP is a list of disorders that HHS recommends states screen for as part of their newborn screening programs. Early detection of DMD will allow children to receive FDA-approved therapies when they have the greatest chance of effectiveness in slowing the progression of the disease.

This announcement follows a bipartisan letter that Senator Collins and a group of nine members of Congress sent last month to HHS Secretary Robert F. Kennedy Jr., requesting that Duchenne muscular dystrophy be added to the Recommended Uniform Screening Panel.

“Most boys with Duchenne muscular dystrophy are diagnosed at four or five years old, when meaningful muscle loss has already occurred, so this decision from HHS will allow families to get answers at birth and take advantage of approved therapies when they can make the greatest difference,” said Senator Collins. “Throughout my Senate service, supporting research for Duchenne muscular dystrophy has been one of my highest priorities, and I am pleased that this important step will help ensure children receive timely diagnoses and access to care that can slow the progression of this devastating disease.”

“With Duchenne muscular dystrophy (DMD) being added to the Recommended Uniform Screening Panel, families of newborns identified with this condition will have early guidance for appropriate medical care, including the growing list of approved therapies. My family and I are grateful for Senator Collins’ influence in DMD being added to the RUSP as well as her consistent support of federal research funding that led to the development to new therapies to treat the condition,” said Brian Denger of Biddeford, Maine, whose son, Patrick, has DMD.

As Chair of the Appropriations Committee, Senator Collins has secured millions of dollars in yearly funding bills to advance Duchenne muscular dystrophy research. Specifically, she secured a funding increase of $500,000 for the CDC Muscular Dystrophy program in the Fiscal Year (FY) 2024 Labor, Health and Human Services, Education, and Related Agencies appropriations bill and $10 million for medical research dedicated to Duchenne muscular dystrophy in the FY 2024 Defense appropriations bill.

Earlier this year, Senator Collins was honored by the Foundation to Eradicate Duchenne for her leadership in securing this research funding. Senator Collins received this recognition at the Foundation’s 25th annual “Dining Away Duchenne” event.

Source: Senator Susan Collins