Quest shares lessons from parents who have successfully helped their children with muscle diseases grow into self-reliant adults
posted on October 1, 2011 - 3:32pm
When Vance Taylor was a boy, he didn’t know any adult he could look to and say, “There’s somebody like me.”
His mother, Morena Noyes, recalls the first time she took Vance and his sister Kathy — both of whom have limb-girdle muscular dystrophy — to MDA summer camp.
“We were still in the parking lot, in our Astro van,” Noyes says. “Vance looked, and then he turned to his sister and said, ‘Kathy,...
Deciding to experience an abundant life allows for the fewest regrets in the end
posted on October 1, 2011 - 12:33pm
Many years ago, when the physician said that my son Joe, who had type 1 spinal muscular atrophy, perhaps would live until 2 years old, I went into “Rambo mode,” ready to attack anything that got close enough to harm him.
But as the years went by and Joe’s health held stable, I silently vowed I would do my best to allow him to live outside the sterile little bubble I had created around him.
A psychologist who ran MDA parent support groups offers guidance on ways to handle misbehavior
posted on October 1, 2011 - 8:30am
The most important element of disciplining a child is to have your anger under control when doing the disciplining. When your anger is under control, you earn respect from your child, the discipline will be effective, and you are modeling how children can handle their own anger in a healthy manner.
Your anger is under control when:
Get those cameras ready! MDA is seeking Make-a-Muscle pix and photos of accessibility makeovers
posted on July 28, 2011 - 10:33am
This summer, MDA is inviting everyone to participate in its new "Make a Muscle, Make a Difference" public awareness campaign by submitting photos of friends and family flexing their muscles for MDA.
MDA also is seeking photos for its "Accessible Spaces Gallery" debuting in August on the MDA Transitions Resource Center, a website designed to help young people with muscle diseases make the...
posted on July 1, 2011 - 1:57pm
Thanks to improvements in diagnostic and clinical care, there’s a new population of people in the world: adults with “pediatric” muscle diseases.
MDA is committed to ensuring bright futures for all our children with neuromuscular diseases who will someday “transition” into adults with a different set of needs than they had as children.
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
“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.
posted on January 1, 2011 - 4:51pm
Pinalben “Pinky” Patel, 28, was born in a village in Western India and moved to the United States with her family four years later. She already was starting to show symptoms of Friedreich’s ataxia (FA).
“My aunt and cousin took me trick-or-treating for the first time,” she says. “When we got home, my aunt complained that I kept falling down on purpose for attention. A couple years later my...
