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Spinal Muscular Atrophy Center

CHKD's SMA Care Center offers evaluation and treatment opportunities for pediatric and adult patients with spinal muscular atrophy (SMA). Recognizing the need for multispecialty collaboration for patients with SMA, our clinic can facilitate consultations within our health system for specialties including cardiology, pulmonology, sleep medicine, orthopedics/bone health, neuropsychology, neurodevelopmental neurology, and pain/palliative medicine. CHKD's SMA Care Center is led by Dr. Crystal Proud who has subspecialty expertise and is board certified in neuromuscular medicine.

Considering Treatment with Spinraza or Zolgensma?

There are currently two FDA-approved medications for the treatment of spinal muscular atrophy: Spinraza (nusinersen) and Zolgensma (onasemnogene abeparvovec-xioi). Dr. Proud will review the mechanism of action, potential benefits, possible adverse effects, and method of administration, as well as required monitoring parameters. Every patient is unique and may require different methods of administration or supportive care for their treatment.

If treatment is desired, the appropriate documentation and authorization requests will be initiated. Reassessments every four to six months in the SMA Care Center are required for patients receiving either treatment. Infants with spinal muscular atrophy may require more frequent visits.

Gene Therapy Treatment Offers Hope 

Meet our patients and find out how new FDA-approved treatments are helping patients with SMA at CHKD.

Meet Kaeli

Meet Jacob