Optimizing Outcomes For Adults With Spinal Muscular Atrophy 

Patient-Centric Strategies for the Interprofessional Treatment Team

Many specific challenges are faced by the adult spinal muscular atrophy (SMA) population. Through this SMA Grand Rounds educational series, a comprehensive review of the etiology and pathophysiology of SMA in adults will be provided, followed by a discussion of pivotal trial data for novel disease-modifying therapies (DMTs). The Grand Rounds feature a case-based segment tailored to the interprofessional care team, and will emphasize shared-decision making with a patient-centered approach. Other resources, including the patient portal videos found below, provide an overview of the SMA patient experience.

To view more information about the CE activity and to claim credit please click here.

Patient Video 1: Connie

Connie was diagnosed at 18 months of age with SMA type 2. In this interview, Connie discusses the unique challenges, as well as triumphs, she has faced throughout her life and how she has persevered. She recently purchased her first house, works from home, and lives independently.

Patient Video 2: Collin

Collin discusses life with his family, the experience with owning a small business from home, and overcoming anxiety related to his diagnosis. Collin was diagnosed with SMA type 3 at the age of 13.

Patient Video 3: Kevan

Kevan was diagnosed with SMA type 2 as a toddler, following his older sister Connie. Kevan is similarly unstoppable; having traveled across the globe to meet his future wife, he now works from home and still enjoys travel with his organization and community.

Patient Video 4: Dan

In this interview, join 22-year-old Dan and his mother. Dan was diagnosed with SMA type 1/2. He doesn’t let SMA define him, and his determined and positive spirit is palpable. He loves sports and his relationships with friends and family.

Meet the Moderators

Claudia A. Chiriboga

Claudia A. Chiriboga, MD,

Professor of Neurology and Pediatrics

Columbia University Irving Medical Center

New York, New York

Vanessa Battista

Vanessa Battista, RN, MS, CPNP-PC, CHPPN

Pediatric Nurse Practitioner

Dana-Farber Cancer Institute

Boston, Massachusetts

Mark Huffmyer

Mark Huffmyer, PharmD, BCGP, BCACP

Clinical Ambulatory Care Pharmacist

University of Kentucky

Lexington, Kentucky

Additional Resources