We are delighted to share exciting news for the Duchenne community: Governor Ron DeSantis has officially signed Florida’s Duchenne newborn screening legislation (HB 1089 / SB 524) into law. With this historic act, Florida becomes the latest—and one of the largest—states to add Duchenne to its newborn screening panel.
This achievement marks a major milestone in our ongoing fight to ensure every child born with Duchenne is diagnosed as early as possible, giving families the critical time they need to access care, support, and therapies.
Soon, babies born in Florida will be screened for Duchenne shortly after birth. This early diagnosis is crucial. Duchenne is a progressive, muscle-wasting genetic disorder that often goes undiagnosed until symptoms become visible, typically around age five. With newborn screening, families can seek early intervention support, care from specialists, genetic testing, and access to approved therapies much sooner, giving children the best chance at improved outcomes and a higher quality of life.
This win would not have been possible without the tireless work of advocates across Florida and the country. Families impacted by Duchenne, healthcare professionals, and organizational partners rallied together, meeting with lawmakers, sharing personal stories, and elevating the urgency of this effort. We especially want to recognize the families who bravely spoke out, the medical professionals who lent their voices, and the champions in the Florida legislature, including Rep. Erika Booth, Rep. Adam Anderson, and Senator Gayle Harrell, who understood the importance of early detection. Your collective advocacy made this happen, and we thank you.
Our next steps will be to secure funding for implementation. While the law is currently considered an unfunded mandate, we are engaging with lawmakers to ensure that dedicated funding is included in the FY 2025-26 state budget. PPMD will continue working closely with the Florida Department of Health to support a smooth and effective rollout of Duchenne newborn screening. We will also provide resources to healthcare providers and families so they can confidently navigate the next steps after a positive screen.
Thank you to every advocate who helped make this hope a reality. This is your victory, and a powerful reminder that when we raise our voices together, real change is possible.
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