Children with an MD

Dedicated MDA family caregivers share best practices for supporting loved ones and themselves

posted on October 30, 2014 - 9:19am
“If I was down, who was going to take care of him?” 

Life is hard but full of love at this small center run by the families of Nepalese boys with Duchenne muscular dystrophy

posted on June 23, 2011 - 3:29pm
QUEST Vol. 18, No. 3
“I have a degree in biochemistry, and no experience in physiotherapy.” I kept reminding myself of this fact as Suse, a volunteer from Germany, and I first walked into the Duchenne Muscular Dystrophy (DMD) Centre for Boys in Bhaktapur, Nepal.

Tech-savvy Girl Scouts designed and built an award-winning wheelchair backup camera for friends with SMA

posted on May 25, 2011 - 12:18pm
Ten-year-old Quinn Schnitzlein has been using a power chair since he was 3, so he’s a pretty good driver. But the boy from Marietta, Ga., who has spinal muscular atrophy (SMA), often bumped into things when he backed up. One day last year, Quinn and some friends were at a fast-food restaurant. “We were at different tables,” Quinn says, “and when I’d try to turn around to talk to them, I kept...

Logan Mitzel, who has Duchenne muscular dystrophy, recently lived his dream of swimming with the 14-time Olympic gold medal champion

posted on March 8, 2011 - 1:06pm
Logan Mitzel has one word for his swim with Olympic champion Michael Phelps: “awesome.” The 11-year-old from Aurora, Ill., who has Duchenne muscular dystrophy (DMD) and relies on a manual wheelchair for mobility, loves to swim so much that in 2010 he completed a streak of swimming every day for 77 consecutive days.

Alex Amble, who has Charcot-Marie-Tooth disease, is trying to raise research dollars for MDA via his music and unusual playing style

posted on February 14, 2011 - 5:02pm
Amble playing a "techno music" piece that he composed when he was 9.

The mother of a man with SMA seeks to inspire others to modify favorite family recipes to accommodate a loved one's eating difficulties

posted on January 1, 2011 - 1:31pm
QUEST Vol. 18, No. 1
Have you ever considered whether you eat to live or live to eat? Food often holds a place of honor in our lives. Have you noticed how many events are accompanied by an element of food and drink? We have cake to celebrate birthdays and family reunion potluck picnics, as well as champagne toasts at a wedding.

“Ruthie B. Goose,” the work of a 10-year-old girl with Charcot-Marie-Tooth disease, explores determination, trust and achieving your dreams

posted on November 17, 2010 - 4:57pm
Ruthie B. Goose is by no means your average goose. Ruthie has very high expectations of herself — specifically to fly higher than any other bird has flown before. Ruthie’s resolution and her efforts to fly to 37,901 feet are the subject of a book written by a 10-year-old girl and her father, both of whom have Charcot-Marie-Tooth disease (CMT).

Morgan's Wonderland in San Antonio has it all

posted on October 1, 2010 - 5:00pm
QUEST Vol. 17, No. 4
Accessible family fun is the focus of Morgan’s Wonderland, an amusement park designed specifically for children and adults with special needs. The 25-acre facility in San Antonio, Texas, is a place where kids of all abilities can interact.