Help and Hope for Friedreich’s Ataxia

Bella, a 15-year-old in Fort Worth, Texas, loves jellyfish, horses, anime, Billie Eilish, reading sci-fi and fantasy, and making art. But living with Friedreich’s ataxia (FA) makes it hard for her to engage in some of her favorite activities. “I can draw and paint for only a few minutes before my hand starts to hurt, so I . . .

Read More

Elizabethtown College Seeks Young Adults With CMT for Survey About Social Life

Young adults living with Charcot-Marie-Tooth disease: You can help in a new study. Allison Eveler, a senior occupational therapy major at Elizabethtown College in Pennsylvania, is conducting an undergraduate research study to determine the impacts of CMT on the social participation of young adults. Allison, who herself lives with CMT, recognized a need for research . . .

Read More

I Don’t Dream of Running — But I’m Grateful MDA Team Momentum Does

“What would you do if you weren’t disabled?” Yep — that’s the hard-hitting question everyone and their mother wants to know. Can you say, #cliché? Truthfully, at this point, anyone who’s anyone knows I would twerk. And that’s what I’ve started telling people. But when most people ask, “twerking” isn’t generally the answer they’re hoping . . .

Read More