Michael Wogan, who had congenital muscular dystrophy and was killed in a Reno air show accident, enjoyed travel, airplanes and adventure
Michael Wogan had been looking forward to the trip to the National Championship Air Races in Reno, Nev.
According to his younger brother James, “Michael liked to get out and travel, and he was so excited about getting on a plane.”
Michael’s older brother Billy, 26 — who, like Michael, 22, and James, 19, has congenital muscular dystrophy (CMD) — was supposed to attend the show with their dad. When...
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
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.
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.
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
“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?”
FSHD researcher Patrick Reed at work in his lab.