Mama might have taught you to be modest and retiring, but those qualities don't cut it when you're fighting the system.
Successful advocacy demands that you believe you're entitled to have what you want, and that you squawk loudly enough to get it. But squawking is an art. Rude, angry squawking can lead straight to the chopping block.
It takes finesse coupled with persistence — squawking in...
Money — it's a big issue when you're coping with a neuromuscular disease. The search for funds to cover needed equipment, home modifications, drugs, treatments and other expenses, and the fight to get benefits from insurance companies and government agencies can be as stressful as the effects of the disease itself.
In this issue, Quest attempts to provide a map of some of the traps, detours and...
When their baby was born with overwhelming special needs, these parents became experts in nemaline myopathy
Like many first-time parents, Doug and Tina Kurtz of Dayton, Ohio, immersed themselves in books on parenting in preparation for their new arrival. But when their son, Brent, was born with a rare muscle disorder, the Kurtzes found themselves abruptly plunged into a world where none of their parenting books could help.