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All 50 States and DC Implement Spinal Muscular Atrophy Newborn Screening

2024 has already brought several exciting developments throughout MDA’s advocacy priorities and policy areas, but one of the biggest victories for the MDA community so far this year is the full implementation of routine screening for spinal muscular atrophy (SMA) in all 50 U.S. states and Washington, DC. This means that every child born with SMA in the United States will be diagnosed in infancy and have access to early intervention and treatment.

“With all 50 states and DC screening for SMA, no longer will any individual born with SMA in the United States go through a diagnostic odyssey that damages their health and wellbeing,” says MDA’s Vice President of Public Policy and Advocacy, Paul Melmeyer, “Instead, babies will be diagnosed within the first week of life and life-changing treatment should commence shortly thereafter. This milestone is another key step in transforming SMA from a deadly disease to a treatable, livable condition.”

Newborn screening plays a pivotal role in ensuring that every child receives the right treatment and is connected with expert clinical care as soon as possible. By incorporating SMA screening across all 50 states, healthcare providers can identify infants at risk of SMA early, facilitating timely intervention and access to life-changing therapies.

This achievement could not have come to fruition without the incredible work of MDA advocates, healthcare professionals, families, and many others who fought for change. The valuable support and efforts within our community and MDA Advocacy Team to move newborn screening programs forward have made this moment in history possible and have set a precedent for the future.

There are more exciting developments for newborn screening programs yet to come, including the expansion of Pompe screening to a total of 45 states and the addition of Duchenne muscular dystrophy (DMD) to the state screening panels in Ohio, New York, and Minnesota in 2024. MDA helped lead the nomination of DMD to the federal Recommended Uniform Screening Panel (RUSP), which is still being considered by the advisory committee overseeing the nomination.

MDA’s Advocacy team remains committed to supporting newborn screening programs and advocating for high-quality care for individuals living with SMA and other neuromuscular disorders. The Advocacy Team’s goals and initiatives for 2024 also include accelerating therapeutic development and pushing for advancements in gene therapies, drugs, and medical devices that can enhance the quality of life for those affected by neuromuscular diseases.

Next Steps and Useful Resources

  • Learn more about SMA and MDA’s ongoing advocacy efforts by exploring our SMA resources, including visiting our SMA resources page.
  • Learn more about Spinal Muscular Atrophy (SMA) here.
  • Learn more about Duchenne muscular dystrophy (DMD) here.
  • Learn more about Acid Maltase Deficiency (also called AMD, Pompe disease, glycogenosis type 2, acid-alpha glucosidase deficiency, lysosomal storage disease) here.
  • MDA’s Resource Center provides support, guidance, and resources for patients and families. Contact the MDA Resource Center at 1-833-ASK-MDA1 or ResourceCenter@mdausa.org
  • Join us as we continue to fight to expand newborn screening nationwide: mda.org/advocacy.
  • Stay up-to-date on Quest content! Subscribe to Quest Magazine and Newsletter.

Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.