The Winter 2014 issue of Quest marks a new chapter for MDA’s flagship publication in print. Our goal with this redesign is to provide you, our dedicated readership, with a more contemporary and visually dynamic resource through which to present the research news and broader narratives that matter most to MDA families and supporters and all those affected by neuromuscular disease.
The year was 1986, and the Duchenne muscular dystrophy (DMD) community was more excited than it had been for decades. A group of MDA-supported researchers had identified the genetic cause of the disorder — any of a number of different flaws (“mutations”) in the gene for a newly identified muscle protein, one that would come to be called dystrophin.
When I fell several months ago and couldn’t get up under my own power, I knew it was time to let go. Or rather, time to finally grab a hold.
For the first 26 years of my life, I could walk on my own with confidence. But on that day, as I propped myself up using the bumper of a car and a mailbox, I realized that was no longer the case.
Every industry has its trade shows and the granddaddy for the disability community is the Abilities Expo. Introduced in 1979, the Expo’s target audience is people with disabilities, their family members, caregivers, seniors, wounded veterans and health care professionals.
Without the help of my paid caregivers, I can’t get out of bed. I put my life in their hands every day, and that’s why it was such a slap in the face when one of my aides stole my work laptop.
It’s been well-documented that individuals with disabilities are victimized by crime, including burglary/theft, at much higher rates than the rest of the population. In fact, we’re often targeted...
To exercise or not to exercise? I can almost hear the people reading this article screaming, “NOT!” Truthfully, until about a year ago, I would have been screaming NOT the loudest, the longest and with absolutely no hesitation.
Author Danise Armstrong riding her tricycle.
Living with CMT
When Carmen Bertoni came to the University of Tulane in New Orleans from her native Italy back in 1995 to study the burgeoning science of molecular genetics, she knew she wanted to study genetic disorders but not solely to advance the field. "I wanted to work on something that would potentially be curable within my lifetime," she says.
By the time Dongsheng Duan finished medical school at West China University of Medical Sciences in Sichuan Province in the late 1980s, he knew he wanted to study biological sciences in the United States. Political turmoil in China temporarily derailed his plans, but in 1993, he left his home country. By the following year, he was at the University of Pennsylvania, working with Katherine High, an...
In 2001, Charles Gersbach began his graduate studies in biomedical engineering at the Georgia Institute of Technology in Atlanta, joining a center that was working on constructing semi-artificial muscle, bone and cartilage tissues.
He was interested in constructing new materials and making tissue implants, but what intrigued him more were the genetic underpinnings of tissue growth and...
You don’t have to look far to figure out how Hansell Stedman got interested in Duchenne muscular dystrophy (DMD). His older brother, Holt, and younger brother, Roland, had the disease.