Giving Voice to the Patient Experience in Neuromuscular Disease: Lily Sander

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"To me, being the National Ambassador truly means that I have this incredible responsibility of representing everyone in the community to the best of my ability. So, when I'm giving these presentations, I truly see myself as an embodiment of the community, and my goal is to give a voice to people who may never enter these rooms."

Charcot-Marie-Tooth disease (CMT) is an inherited peripheral neuropathy that primarily affects the distal extremities, leading to progressive muscle weakness, atrophy, and sensory deficits. Studies have shown that symptoms of CMT typically emerge in childhood or early adulthood, reflecting the gradual nature of the disorder. Research also has revealed that variants of CMT are linked to mutations in more than 100 different genes. Although no disease-modifying treatments are currently available, interventions such as physical therapy and analgesics can help manage the disease's symptoms and maintain quality of life.¹

Patient advocates like Lily Sander, a young patient living with CMT,canplay an important role in raising awareness and connecting the neuromuscular community with researchers and clinicians. Ahead of the 2026 Muscular Dystrophy Association (MDA) Clinical & Scientific Conference, held March 9-11, in Orlando, Florida, the MDA announced that Sander will continue her role as the 2026 MDA National Ambassador. The MDA noted that she will represent the organization throughout the year at national events, media engagements, advocacy initiatives, and outreach programs.²

At the 2026 MDA Conference, Sander delivered a presentation titled “In Their Shoes: The Patient Experience.”³ She highlighted in her presentation that fatigue is a critical, often underrecognized symptom that affects daily functioning and discussed the significance of addressing it. Following the session, she spoke with NeurologyLive^® to discuss the importance of conveying the patient perspective to researchers, clinicians, and others unfamiliar with neuromuscular disease. Sander also underscored the value of fostering human connection and community, both among patients and between patients and the scientific community.

Click here for more MDA 2026 coverage.

REFERENCES
1. Muscular Dystrophy Association Announces 2025 MDA National Ambassador Lily Sander. News release. Muscular Dystrophy Association. January 27, 2025. Accessed March 23, 2026. https://www.mda.org/press-releases/2025/mda-announces-2025-mda-national-ambassador-lily-sander
2. MDA Announces 2026 National Ambassador Lily Sander Following Landmark Years of National Advocacy. News release. Muscular Dystrophy Association. January 20, 2026. Accessed March 23, 2026. https://www.mda.org/press-releases/mda-announces-2026-national-ambassador-lily-sander-following-landmark-years-of-national-advocacy
3. Sander L. In Their Shoes: The Patient Experience. Presented at: MDA Clinical & Scientific Conference; March 8-11, 2026; Orlando, Florida. Special Presentation.