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.
Upon completion of this activity, participants should be better able to:
Senior Nursing Director, Palliative Care
Dana-Farber Cancer Institute
Boston, MA
Fischahs Chair, Pediatric Rehabilitation
Chief, Department of Rehabilitation
Children’s Hospital Colorado
Professor and Vice Chair, Department of Physical Medicine and Rehabilitation
University of Colorado School of Medicine
Aurora, CO
Board Certified Neurologist and Neuromuscular Physician
Founder and Director, Neurology and Neuromuscular Care Center
Founder and Director, Neurology Rare Disease Center
Denton, TX
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Diana Castro, MD, has relevant financial relationships with Biogen, Biohaven, Cure SMA, Edgewise Therapeutics, Genentech, Novartis, Sarepta Therapeutics, Scholar Rock, Inc. (Grant/Research Support).
Susan Apkon, MD, has relevant financial relationships with Biogen, Biohaven, Capricor, Dyne Therapeutics, FibroGen, Sarepta Therapeutics, Scholar Rock (Researcher).
Vanessa Battista, DNP, MBA, MS, RN, CPNP-PC, has relevant financial relationships with Biogen (Speaker, Speaker’s Bureau).
Patient and caregiver participating in this activity have no relevant financial relationship(s) with ineligible companies to disclose.
All of the relevant financial relationships listed for these individuals have been mitigated according to RMEI policies.
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Physician Continuing Medical Education
RMEI Medical Education, LLC designates this enduring material for a maximum of 0.75 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.
Continuing Nursing Education
The maximum number of hours awarded for this Continuing Nursing Education activity is 0.75 contact hour(s).
This activity was planned by and for the healthcare team, and learners will receive 0.75 Interprofessional Continuing Education (IPCE) credit for learning and change.
In order to receive credit, participants must review the activity content and successfully complete both the post-test and evaluation. You must score 100% on the post-test to receive credit for this activity. If you have questions about this activity, please contact RMEI at [email protected].
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This educational activity may contain discussion of published and/or investigational uses of agents that are not indicated by the FDA. The planners of this activity do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the planners. Please refer to the official prescribing information for each product for discussion of approved indications, contraindications, and warnings.
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