Spinal Muscular Atrophy: An Interprofessional Approach 

Spinal muscular atrophy (SMA) is a devastating genetic neuromuscular disorder that causes a progressive loss of motor neurons in the spinal cord, resulting in severe muscle weakness. SMA onset is generally discovered in infancy or early toddlerhood, as children fail to meet their basic motor milestones, like rolling over, sitting up, and crawling. Historically, this debilitating condition was only treated with supportive care and its more severe forms were often fatal within the first 6 months of life if left completely untreated. However, now there are 3 disease-modifying therapies available for SMA, all of which are very different in their approach to management. Because of the various challenges patients with SMA face, along with the advent of disease–modifying therapies, a multifaceted interprofessional care team approach is necessary for treatment regimen optimization, including treatment selection and integration, care coordination and navigation, and patient education. In this activity, a multidisciplinary and interprofessional panel of experts discuss their approach to SMA from a neurological, physical/rehabilitative, nursing, patient, and parent perspective in their discussion of disease, treatment, case studies, counseling points, and the tears and triumphs of lived experiences.