Overview
Managing SMA extends far beyond the walls of a doctor’s office. Standard clinical metrics and symptom checklists are essential for tracking the disease, but they don’t capture what it actually feels like to live with it every day.
The truest insights about daily life with SMA live within the community itself. They are found in the practical hacks patients share, the adjustments made to maintain professional momentum, and the ways families adapt to navigate a physical world not always built for them.
This panel cuts through the clinical lectures to bring you an authentic conversation among peers who understand the daily reality of SMA. We will dive into the lived realities of navigating dating and relationships, managing a career and employment, and the logistics of travel with SMA.
Speakers
Moderator
Kevin Schaefer
Kevin Schaefer is a columnist for SMA News Today and Bionews’ community editorial manager. Kevin lives with spinal muscular atrophy (SMA) type 2 and advocates for adult inclusion in clinical trials and treatment access.
Panelist
Mindy Henderson
Mindy Henderson is the Vice President of Disability Outreach & Empowerment at the Muscular Dystrophy Association and Editor-in-Chief of MDA’s Quest Media. Mindy lives with spinal muscular atrophy type 2 and advocates for accessibility, inclusion, and independence.
Panelist
Maylan Chavez
Maylan Chavez is a Biogen Influencer, Cure SMA Chapter Lead, and Host of the Access Granted podcast. Maylan leverages years of lived experience to amplify voices in the disability and rare disease communities, advocating for inclusion through storytelling, media, and purposeful collaboration.
Therapist · Caregiver
Albert Freedman, PhD
Albert Freedman, PhD, is a psychologist, author, and rare disease consultant. Drawing from 26 years as an SMA caregiver to his late son, Jack, he specializes in the mental health and emotional well-being of families navigating complex health conditions.