How Parents Can Help Kids Prepare for Adult Life

For 18 years, Linda VanVliet spent most of her non-working time taking care of her daughter, Shelby, who was diagnosed with congenital muscular dystrophy at 3 years old. (That diagnosis was later changed to titin myopathy.) Linda’s work as a school nurse also allowed her to step in quickly when Shelby needed care.  “For a . . .

Read More

Hacking COVID: MDA Staff Edition

In April, MDA fielded a survey to ask its community how COVID-19 was impacting their lives. We heard your responses — anxiety, questions, hope — and wanted to know more. In this six-part blog series, Hacking COVID, people from MDA’s community, all living with neuromuscular diseases, shared how they’ve altered their day-to-day lives, how they’ve . . .

Read More

Meet the MDA Resource Specialists: Mandy

MDA Resource CenterMDA resource specialist Mandy Behling used to think that living unlimited meant swimming with the sharks and climbing Mt. Everest. However, she has come to find that living unlimited means more than just traveling the world and seeking out grandiose adventures.

“Now I think that living unlimited means pushing myself just a little harder than I thought possible the day before,” she says.

Read More

Meet Ashleigh: MDA Resource Specialist

If there was one piece of advice MDA Resource Specialist Ashleigh Peska could offer individuals with muscular dystrophy and other muscle-debilitating diseases, it would simply be, “don’t quit!” Ashleigh, who lives with limb-girdle muscular dystrophy (LGMD), is a shining example of this mantra. A college graduate and former MDA Iowa State Goodwill Ambassador, Ashleigh has . . .

Read More