support and resources

A strong support system makes it possible for one gifted student with Duchenne muscular dystrophy to pursue his dreams

posted on January 9, 2014 - 9:31am
Raymond Walter isn’t your typical teenager. Having graduated from high school at age 14 and from college at 18, he’s already knee-deep in his doctoral studies in mathematics and physics as a Distinguished Doctoral Fellow and a National Science Foundation Graduate Research Fellow at the University of Arkansas at age 19. 

An upcoming webinar from the Medicare Rights Center explores all aspects of Medicare coverage of durable medical equipment such as wheelchairs and hospital beds

posted on January 23, 2013 - 4:00pm
Durable medical equipment (DME), such as wheelchairs, walkers, portable oxygen devices and hospital beds, can be very expensive — and the process for obtaining them from Medicare can be very confusing.  Learn about Medicare coverage of DME and get the latest information on obtaining such equipment in a webinar Tuesday, Jan. 29, from 2 to 3 p.m. Eastern time.   “Medicare Coverage of...

High school graduation made me feel mature, but I grew up the day I realized that I've never been alone in dealing with my disability

posted on July 1, 2011 - 4:12pm
QUEST Vol. 18, No. 3
It didn’t happen during my childhood, when I walked around wobbly with a pediatric walker, smiling and conversing. It didn’t happen in my sophomore year of high school, after an emergency room visit led to an 11-day hospital stay and a diagnosis of type 1 diabetes. It didn’t happen my senior year of high school, after a four-day hospital stay to implant a pacemaker to regulate my slow heartbeat....

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...

A writer with muscle weakness borrows an iPad, and evaluates the pros and cons of this innovative technology

posted on October 1, 2010 - 4:55pm
QUEST Vol. 17, No. 4
The iPad is extremely thin and portable. But at 1.5 pounds, it was still a bit heavy for the author to hold easily.

Scenes from a special place where wheelchairs can fly

posted on October 1, 2010 - 2:37pm
QUEST Vol. 17, No. 4
Here's a fun and fast (less than two minutes!) video of Morgan's Wonderland, a 25-acre theme park located in San Antonio, Texas. According to the Morgan's Wonderland website, "It is the World's First Ultra Accessible Family Fun Park designed specifically for children and adults with special needs, their family members, caregivers, friends and the entire community."

Books can inspire, encourage, educate and — above all — unite people of varying abilities

posted on April 1, 2010 - 4:09pm
QUEST Vol. 17, No. 2
When I was 3 years old, I was diagnosed with Duchenne muscular dystrophy (DMD), the most common of the nine forms of muscular dystrophy. My parents never hid my diagnosis from me but, besides my parents, the only way I learned more about muscular dystrophy (MD) and its future effects on me was through my observation of other campers at MDA summer camp, beginning at age 9. As a child, I never read...
posted on December 31, 2009 - 1:20am
QUEST Vol. 17, No. 1
A comprehensive set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families. The guidelines pull together recommendations previously released by other groups, such as the American Academy of Neurology, and clarify some areas in which consensus has been lacking.