posted on March 31, 2010 - 10:20pm
Jacob Gapko has compiled the first-ever bibliography of books about young people with muscular dystrophy, with help from a Carnegie-Whitney Award from the American Library Association.
Click on the title to access the bibliography:
Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography
posted on October 1, 2009 - 3:26pm
When I was 12 years old, I received a diagnosis of Friedreich’s ataxia (FA), a rare neuromuscular disease. That’s also the year I met Ms. Wheelchair Maryland and started to dream of entering the Ms. Wheelchair pageant. But that goal quickly was overshadowed by the usual adolescent things.
posted on April 1, 2009 - 4:13pm
Letters to Quest: Camp is so important ** Moms on Wheels ** All camps not the same ** No guarantees (life expectancy) ** FMLA and sibling caregivers ** Pay for family caregivers.
posted on January 1, 2009 - 9:34am
Through history, many a young man has gone to sea seeking adventure, so it came as no surprise when the Williams brothers decided to take on the challenges of the sea.
Tough talks demand special skills
posted on November 1, 2008 - 9:48am
“Mommy, why don’t my legs work?”
“It’s not fair, Harrison gets all the attention. What about us? Don’t we matter?”
“You’re my husband. Why can’t we talk any more?”
“What exactly do you mean, there’s no cure?”
posted on July 1, 2008 - 1:50pm
FSHD researcher Patrick Reed at work in his lab.
posted on January 1, 2008 - 3:11pm
On two different occasions, when Aaron came home from MDA summer camp and asked what was new, I’ve blurted out the news that we were moving. Now, years later, it’s a joke, but back then Aaron swore he would never go to camp again.
