Amplifying Patient Voices Through LGMD Awareness Day: Carol Abraham

WATCH TIME: 6 minutes

"LGMD isn’t one disease—it’s more than 30 subtypes, each a condition in its own right. Until disease-modifying treatments arrive, we must amplify the patient’s voice and focus on day-to-day function, independence, and mental health."

The LGMD Foundation is a non-profit advocacy organization whose mission is to raise global awareness of limb-girdle muscular dystrophy (LGMD), a group of rare neuromuscular disorders, and to help individuals with LGMD navigate diagnosis, care, and research opportunities. Founded in 2019, the organization has developed and shared educational resources and toolkits for patients, caregivers, and clinicians to further support awareness and outreach. In addition, it has increased visibility among neuromuscular specialists and myology centers.

In 2015, Carol Abraham, a patient living with LGMD2A/R1 (Calpain-3-related LGMD), launched the first ever LGMD Awareness Day, as a way to concentrate global attention on these rare diseases. Held every September 30^th, the day brings awareness about LGMD’s complexity–it’s many genetic subtypes, variable onset, clinical heterogeneity, and associated complications.

As part of a recent discussion, NeurologyLive® sat down with Abraham to discuss the meaning behind LGMD Awareness Day, and the reasons to celebrate the global initiative. Abraham, the founder of the LGMD Foundation, highlighted the LGMD Foundation’s website as an “information hub” consolidating patient registries, links to subtype-specific foundations, events, and educational tools. Above all, Abraham stressed that broad outreach and storytelling by patients can sharpen research priorities and give clinicians a fuller picture of daily burden beyond exam findings.