Personal Stories

MDA summer camp celebrates 60 years of awesome adventures for children with muscle disease

posted on April 21, 2015 - 9:23am
Ben Schussler loves to fish. So when he’s at MDA summer camp, he heads for the dock and casts his line as often as possible. “I catch two or three fish a day,” 8-year-old Ben boasts with glee in his little voice. Fishing is not a particularly unusual passion for a boy his age, although in Ben’s case, it isn’t something he thought he would — or could — ever enjoy.

Individuals with ALS and their families find unwavering support from MDA

posted on April 21, 2015 - 9:21am
Quest Spring 2015
Like all people living with amyotrophic lateral sclerosis (ALS), Joan Sucher, 65, a mother of three adult children in Ballwin, Mo., was devastated when she received her diagnosis. “My life collapsed,” Sucher shares in an email interview with Quest. “We were inconsolable. I had been healthy and active all my life. I ran regularly and finished nine half marathons after age 48. And I had no family...

The best way to challenge misconceptions about what it means to have a disability is to share our stories and celebrate our differences

posted on April 21, 2015 - 9:19am
Quest Spring 2015
When I was 2, I was diagnosed with central core disease (a disease that causes problems with the tone and contraction of skeletal muscles). Doctors told my parents, who were trying to wade through the unknown waters of this thing called “neuromuscular disease,” that I would never be able to walk on my own without a walker or crutches. But years of physical therapy, leg braces, a walker and a pair...
posted on April 21, 2015 - 9:12am
Quest Spring 2015
There sure is a lot of happiness going around — videos going viral with giggling babies, happy dogs and even happy elephants. For the past year we've watched montages of people joyfully taking to the streets dancing to the infamous Pharrell Williams’ hit song, “Happy.”

Film buff Zach Smith finds a new technology to aid people with neuromuscular disease

posted on April 21, 2015 - 9:11am
Quest Spring 2015
When he was 17 years old, Zach Smith, who received a diagnosis of Duchenne muscular dystrophy (DMD) at age 6, began researching technologies that could help him use his arms to do things he had trouble with, such as eating or playing Ping-Pong.

News and updates from the MDA community

posted on April 21, 2015 - 9:05am
Quest Spring 2015
A True Advocate: Kristin Stephenson, MDA’s new vice president of Policy and Advocacy, discusses her new role and her personal connection to MDA

Feedback from Quest readers and the MDA community

posted on April 21, 2015 - 9:01am
Quest Spring 2015
On the Job

MDA Muscle Walk connects MDA families and raises critical funds for lifesaving treatments and cures. So are you ready to join us?

posted on January 5, 2015 - 9:25am
Quest Winter 2015
When Lizzie Chamberlain of Jacksonville, Ill., was 2 years old, her physical development relative to other children began to plateau — and then decline. Lizzie received a diagnosis of type 3 spinal muscular atrophy (SMA).