Personal Stories

Exploring the unique dynamic — its blessings and occasional hurdles — of one sibling caring for another with neuromuscular disease

posted on October 8, 2015 - 9:51am
In a small Detroit apartment, Sam Barash, 32, lives with and cares for his 20-year-old, soon-to-be 21, sister, Angela Barash, who is living with myotonic muscular dystrophy and myasthenia gravis.

For many individuals with neuromuscular diseases, finding a meaningful career can make for a richer, more independent life

posted on October 8, 2015 - 9:47am
Quest Fall 2015
Going from being a high school or college student to an independent, working adult can be challenging for almost anyone. But for individuals who live with neuromuscular diseases, the transition into the workforce can be especially overwhelming.  But young adults in the MDA community who have successfully made this employment leap agree that the rewards of meaningful work are worth the...

Sometimes conquering fear of the uncertain and finding a world of possibilities is just a train ride away

posted on October 8, 2015 - 9:45am
Quest Fall 2015
Have you ever felt trapped, isolated or suffocated by transportation-related issues? I’m sure those of you who use a wheelchair, like I do — I have spinal muscular atrophy — or rely on some other form of mobility aid have felt these things a time or two. I know I have. But in the past couple of years, I’ve been determined to face my greatest fear, which includes...

Finding a new job for the summer in a new city and learning the value of embracing the unexpected

posted on October 8, 2015 - 9:31am
Quest Fall 2015
I decided to go to business school because I wanted to propel myself into a new career in a new industry. Leaving the tech world for the life sciences field would be no easy transition, and I realized a master’s degree would be my best way to accomplish this goal.

A first-time MDA camper reminisces about his unforgettable experience

posted on October 8, 2015 - 9:29am
Quest Fall 2015
The excitement that surrounds MDA Summer Camp is evident from the energy and smiling faces of the campers. That’s perhaps especially true of first-time campers.

One woman with spinal muscular atrophy uses the power of invisibility to her advantage

posted on October 8, 2015 - 9:27am
Quest Fall 2015
I was born with a superpower, only it took most of my life to realize that I had it. I had suspicions when I was younger, but never fully understood the breadth and depth of this superpower until recently. I have the power to be invisible. I can be in a restaurant and the wait staff doesn’t see me. I can be going down the street where people are aggressively distributing pamphlets, and I...

News and updates from the MDA community

posted on October 8, 2015 - 9:25am
Quest Fall 2015
MDA Muscle Walk: Why I Walk

For many young adults with neuromuscular disease, the challenges and rewards of college offer a steppingstone to greater independence

posted on July 14, 2015 - 3:23pm
Quest Summer 2015
“I was already signed up for Duke, and was wait-listed for Yale, but waiting for Harvard. When I opened the Harvard letter, I got the shock of my life, and that was it!” says 17-year-old Caroline Zheng on being accepted to her dream school, Harvard, where she’ll start classes in the fall.