The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the…

I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the parent of a 12-year-old who was diagnosed at age 8 with Friedreich’s ataxia (FA),…

So much of living with a progressive, lifelong disease like Friedreich’s ataxia (FA) is mentally processing and accepting the physical changes it brings. But with the widespread degeneration of my body and the resulting decline in my abilities, that can feel like an overwhelming task at times. Every night,…

Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place…

On a muggy Fourth of July in Georgia in 1993, my husband, Dave, and I walked along the side of the road, returning to our car after watching fireworks. There weren’t any sidewalks, so I walked on the edge of the road to avoid tripping in the dark while Dave…