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.

Through its fundraising, advocacy, health care services and support network, MDA helps make possible the everyday successes of its families and the lifesaving work of its researchers

posted on October 30, 2014 - 9:15am
Quest Fall 2014
For people fighting neuromuscular disease,“progress” is a word that describes encouraging advances in the search for treatments and cures. But it’s also a word that evokes the forward-looking perspectives and remarkable life journeys of those living with these diseases who meet extraordinary challenges.  

After the fear subsided, my diagnosis gave me a healthy perspective on life

posted on October 30, 2014 - 9:12am
Quest Fall 2014
Upon hearing my diagnosis — type 1 myotonic muscular dystrophy (MMD, or DM) — at the age of 20, I must admit, my world crumbled for a moment. I’ll never forget how the room seemed to shrink and spin, how the doctor’s voice morphed into white noise, and how visions of immobility caught my breath. 

Meet the Marquez family

posted on October 30, 2014 - 9:09am
Quest Fall 2014
Earlier this year, Bonnie and Ethan Marquez and their sons, Peyton, 8, and Logan, 11, were on vacation in Yosemite National Park when Peyton, who has Duchenne muscular dystrophy (DMD), became intrigued by the park’s famous Half Dome — a 4,700-foot-high granite rock formation in the shape of, you guess it, a dome sliced in half.

News, events and updates from the MDA community

posted on October 30, 2014 - 9:05am
Quest Fall 2014
Hustle for Muscle: A family affected by MD forms endurance running team to raise money for MDA

Feedback from Quest readers and the MDA community

posted on October 30, 2014 - 9:03am
Quest Fall 2014
Letters to the Editor: Adventures in parenthood Editor’s note: In response to the summer issue of Quest’s cover story, A Dream Within Reach, about the challenges and rewards of becoming a parent when you have a neuromuscular disease, we received letters and comments online at that were overwhelmingly supportive. Here are two responses: 

Balancing parenthood and neuromuscular disease is not just possible — many dedicated moms and dads who live that reality every day say having kids is the best decision they've ever made

posted on July 7, 2014 - 9:23am
Quest Summer 2014
Matthew Martin and Amanda Hall have more than a few things in common. They’re roughly the same age — Martin is 28; Hall is 30. They both call the state of Texas home — Martin in Rowlett; Hall in Glenrose. Then there’s the fact that each lives with a neuromuscular disease — Martin was diagnosed with Duchenne muscular dystrophy (DMD) at the age of 8; Hall with...

Five tips for dealing with the diagnosis of a late-onset muscle disease

posted on July 7, 2014 - 9:17am
Quest Summer 2014
Each form of muscular dystrophy is devastating in its own way. For some patients, symptoms may manifest at birth or at a young age. My situation was different.