PPMD is excited to announce another significant milestone: Massachusetts has officially approved the addition of Duchenne to the state’s newborn screening panel! The addition of Duchenne to the Commonwealth’s newborn screen panel was included as an amendment to the Maternal Health bill (H. 4999) that was signed Friday, August 23, by Governor Healey and will be enacted in 90 days.

Massachusetts is now the fourth state, after Minnesota, Ohio and New York, to add Duchenne to their state newborn screening panels. 

Massachusetts has 18-months to begin screening all newborns for Duchenne, so screening is expected to begin by June 2026, if not earlier. There will be a ceremonial signing of H. 4999 on Monday, August 26.

For more than a decade, PPMD has been at the forefront of advocating for Duchenne newborn screening, reflecting our commitment to early diagnosis and better care. Today’s milestone represents a significant advancement in the broader effort to expand newborn screening for Duchenne to other states.

 We commend the Massachusetts legislature for taking this crucial step to ensuring that every baby born is protected from the irreversible consequences of a diagnostic odyssey with Duchenne. This will also allow timely interventions during critical therapeutic windows for those diagnosed, giving them the best chance for effective treatment.

“Our mission at PPMD is to accelerate research, influence policy, demand the highest standards of care for every family, and ensure access to life-changing therapies,” says Pat Furlong, PPMD’s President and CEO. “Newborns identified through the screening program will benefit from vigilant developmental monitoring, timely physical and speech therapy, genetic counseling, and carrier screening for relatives. With eight FDA-approved treatments for Duchenne—four of which are approved for use in infancy—and more promising therapies in development, we remain steadfast in our commitment to providing the best possible care when it matters most: early in a child’s life.”

This is another pivotal step forward for newborn screening for Duchenne. Our vision is to ensure that all babies in all states have the same opportunities for diagnosis and care. PPMD continues to work towards the inclusion of Duchenne on the federal Recommended Uniform Screening Panel (RUSP), promoting newborn screening for Duchenne in other states, and expanding additional Certified Duchenne Care Centers across the country.

If you are interested in supporting state or federal efforts by sharing your story or contacting your state elected officials, please reach out to Lauren Stanford at lauren@parentprojectmd.org.

To learn more about PPMD’s work in newborn screening, click here.