Why Effective Care in SMA Requires More Than a Neurologist: W. Bryan Burnette, MD

August is Spinal Muscular Atrophy (SMA) Awareness Month, an observance that lands at a genuinely different moment for the field than it did even a decade ago. The arrival of disease-modifying therapies (DMTs) has meaningfully extended survival and functional life for many patients, transforming SMA from a diagnosis once managed largely with supportive, palliative measures into a chronic condition that now requires coordinated, lifelong management. That shift has put new emphasis on how, and by whom, SMA care is actually delivered.

Although SMA originates from a single genetic defect affecting motor neurons, its clinical impact extends well beyond the neuromuscular system, touching respiratory function, nutrition, bone health, and everyday functional participation.¹ Recent literature reinforces why a multidisciplinary model, rather than neurology alone, has become the standard of care. Studies continue to show that patients followed by coordinated, multispecialty teams have better-characterized functional trajectories and outcomes than those managed through narrower referral pathways.^2,3 For clinicians building or refining an SMA care pathway, understanding which subspecialties belong on that team and why, has become as central to good outcomes as the DMT itself.

WATCH TIME: 5 minutes | Captions are auto-generated and may contain errors.

“Although SMA is typically classified as a neurologic disease, it really is a multisystem disorder.”

In a recent interview with NeurologyLive^®, W. Bryan Burnette, MD, chief of neurology at Nemours Children’s Health, who has cared for patients with SMA for nearly 20 years, walked through what a fully realized multidisciplinary team looks like in practice. He named the nonnegotiable specialties, including neurology, pulmonary medicine, and nutrition. In addition, he explained why physical therapy and physical medicine and rehabilitation have taken on outsized importance as more patients on DMTs survive into adulthood and need ongoing functional assessment to maintain treatment access.

Burnette also spoke candidly about where multidisciplinary care still breaks down, particularly the loss of Medicaid-covered specialty access once patients age out of pediatric systems, and what he believes clinicians owe both their patients and their less-specialized colleagues in community practice. Watch the full conversation in the video above for his perspective on advocacy, care coordination, and just how dramatically the treatment landscape has changed since he began practicing before DMTs existed.

REFERENCES
1. Farah EE, Farrar MA, Kariyawasam DS, Paguinto SG. Strengthening adaptive functioning and participation in the contemporary spinal muscular atrophy paradigm: clinical perspectives and future directions. World J Pediatr. Published online July 22, 2026. doi:10.1007/s12519-026-01063-0
2. Batista EC, Zanoteli E, Fonseca HAR, et al. Clinical Characterization of Patients With 5q Spinal Muscular Atrophy Types 2 and 3 in Brazil: A Cross-Sectional Observational Study. Clin Genet. 2026;110(2):172-188. doi:10.1111/cge.70176
3. Hu A, Zhang X, Ma L, et al. Perioperative Management for Patients With Spinal Muscular Atrophy Undergoing Scoliosis Surgery: A Single-Center Retrospective Study. Orthop Surg. 2026;18(7):1328-1341. doi:10.1111/os.70341