Here at MDA, we are working to ensure all contact information is up-to-date for those who are registered in order to serve you as well as we possibly can. If your dependent has recently turned 18, please encourage them to email our MDA National Resource Center, at resourcecenter@mdausa.org, to update their contact information and to hear . . .
Researchers at the Hospital for Sick Children in Toronto, Canada are seeking young adults living with muscular dystrophy to participate in a survey about their interest in and experiences receiving genetic information. Participants will be required to complete a 10-15 minute online survey that collects largely quantitative data, as well as some open-ended responses. After completing . . .
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 . . .
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 . . .
OK, friends. I’ve got some really great news. As you know, MDA’s commitment to improving the lives of young adults living with muscle-debilitating diseases is near to my heart. It’s why I chose to accept the role as the first adult MDA National Goodwill Ambassador. It’s been almost a year since we began implementing MDA’s . . .
Jackie Johnson was 18 months old when she was diagnosed with spinal muscular atrophy. She has an associate of applied arts degree in advertising, design and Illustration; a Bachelor of Arts in integrative studies with a concentration in psychology; and a Master of Arts in teaching. She has worked in the education field and as . . .
“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 . . .
