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.

One-hour webinar, ‘Straightening the Growing Spine,” describes bracing and surgery options for children with a spinal curvature caused by a neuromuscular disorder

posted on January 25, 2013 - 10:23am
A one-hour, MDA-sponsored webinar features two physicians and the parent of a child with spinal muscular atrophy (SMA) who has undergone bracing and surgery for a spinal curvature, as well as questions and answers from listeners.

From his first washing-machine-sized vent to his current ‘toy’ model, writer Mike Murphy has borne witness to the evolution of a lifesaving technology

posted on January 7, 2013 - 9:25am
Quest Vol. 20, No. 1
For some reason, June 27 keeps popping up in my family’s history. June 27, 1889, was my grandfather’s birthday. It was also the date upon which he married my  grandmother, 20-some years later. On a far less significant — but fun — note: It was on June 27, 1977, that my parents loaded me up in our powder blue Pinto station wagon, and took me to the movie theater to see the original “Star Wars...
posted on January 7, 2013 - 9:21am
Quest Vol. 20, No. 1
My husband is a romantic and I an a realist. The first time we planned a trip abroad, he suggested that I add Paris to the itinerary. I swiftly nixed his request. The thought of orchestrating wheelchair-accessible trips to two countries seemed daunting. But, ignoring the detour to France was my one regret after visiting England. The next time we traveled abroad, I researched our options and...

The game's afoot!

posted on January 7, 2013 - 9:19am
Quest Vol. 20, No. 1
More than 33 million people in the United States are gamers with disabilities. That number grows every year. Once considered frivolous, video games have become an important part of modern culture. Decades ago, no one could have foreseen the video game craze — or the impact it would have on the lives of players with disabilities.

Beth and Dan Gore have a most extraordinary family. Over the past dozen years, the Brandon, Fla., couple has adopted six children with disabilities, the youngest being Manny, a 3-year-old with congenital muscular dystrophy.

posted on January 7, 2013 - 9:15am
Quest Vol. 20, No. 1
Meet Manny. He's one of six children with disabilities adopted by Beth and Dan Gore of Brandon, Fla. Three-year-old Manny — who has merosin-deficient congenital muscular dystrophy and has been in and out of the hospital due to gastrointestinal, respiratory and cardiac issues — is the subject of Beth’s fifth published children’s book, Mighty Manny.

Two long-distance pen pals with CMT finally meet after six years — and find that the differences and similarities in their symptoms enhances their friendship

posted on January 7, 2013 - 9:12am
Quest Vol. 20, No. 1
Nurtured by letter, by phone, by email, by text messaging, the deep-rooted friendship that has developed over six years between Linda and me is undeniable!
posted on January 7, 2013 - 9:03am
Quest Vol. 20, No. 1
From Where I Sit