As of today, Massachusetts has officially begun screening all newborns for Duchenne muscular dystrophy.
This milestone comes after the passage of the state’s Maternal Health bill (H. 4999), which was signed into law by Governor Maura Healey on August 23, 2024. The law included a critical amendment funding the program and mandating the addition of Duchenne to the Commonwealth’s newborn screening panel within 18 months of enactment, meaning the state is both funded and legally required to implement screening on a defined timeline, rather than waiting on separate regulatory or budget decisions.
Today, that promise becomes a reality for families across Massachusetts. Early identification means babies with Duchenne can immediately connect with specialized care, giving them the strongest possible start in life.
A Growing Nationwide Movement
By launching this program, Massachusetts becomes the third state to officially begin statewide newborn screening for Duchenne, joining Ohio and Minnesota as pioneers in protecting newborns from delayed diagnosis. This milestone also comes amidst nationwide momentum; several other states including Arizona, Texas, and Florida have already approved Duchenne screening and are ramping up their individual implementation processes.
We extend our deepest gratitude to the dedicated Massachusetts families, clinicians, and advocates who shared their stories, provided testimony, and championed this amendment. Your unwavering efforts made this victory possible.
In December 2025, the U.S. Department of Health and Human Services (HHS) officially added Duchenne to the federal Recommended Uniform Screening Panel (RUSP). This historic achievement, the culmination of over a decade of advocacy by PPMD and the Duchenne community, paves the way for every other state to follow the inspiring example Massachusetts has set today.
PPMD Supports Newly Diagnosed Families
PPMD is here to support all families with Duchenne, including families with babies identified through newborn screening. This includes developing education materials for families with a newly diagnosed newborn, connecting families with experienced peer mentors, and helping to educate pediatricians and primary care physicians who are involved in the newborn screening process. Our PPMD For You program provides personalized support from care experts in a variety of areas, including newly diagnosed. Schedule a 1:1 appointment with our team here.
Get Involved: Reach Newborn Screening for All
The addition of Duchenne to the RUSP was a watershed moment, but our work is far from finished. Our ultimate vision is to ensure that all babies in all states have the exact same opportunities for early diagnosis and optimal care.
Now that the federal recommendation is in place, PPMD is working state-by-state to help local health departments adopt, fund, and implement Duchenne newborn screening as quickly as possible.
If you want to help support our state or federal advocacy efforts by sharing your story or contacting your elected officials to help get the RUSP implemented in your home state, please reach out to Lauren Stanford at lauren@parentprojectmd.org.
To learn more about PPMD’s comprehensive work in newborn screening, click here.
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