Children with an MD

Dedicated MDA family caregivers share best practices for supporting loved ones and themselves

posted on October 30, 2014 - 9:19am
“If I was down, who was going to take care of him?” 
posted on July 1, 2009 - 4:41pm
QUEST Vol. 16, No. 3
Featured in this article: Jerry Lewis inducted into New Jersey Hall of Fame ** myMDA is MDA's new online community ** Telethon 2008 DVD available ** New books by celebrities Nancy O'Dell, Tom Bergeron ** News about MDA National Goodwill Ambassadors Luke Christie, Ben Cumbo, Lauren Carter, Mattie Stepanek.

Individuals and families struggle to manage the periodic paralyses, a group of diseases that’s too often misunderstood by teachers, employers and even health professionals.

posted on July 1, 2009 - 3:09pm
QUEST Vol. 16, No. 3
People who know me know I lead an extremely active life,” says Linda Feld of Longwood, Fla. “People don’t see me as somebody on a scooter. I’m Linda, and I do all these things every day, and they know me for me. I tell people that periodic paralysis has become my friend. It’s along for the ride, but it’s not going to rule my life.”

Even freshman orientation is more complicated for students with muscle diseases — and their parents

posted on July 1, 2009 - 2:52pm
QUEST Vol. 16, No. 3
Imagine 800 middle school students arriving for freshman orientation at Trabuco Hills High School in Southern California. All students are taking their first steps onto a campus four times the size of their current school, complete with swimming pool, tennis courts, a school store, vending machines and a gym with real wood flooring.

Meet "Ben the Book Saver" and a man who was "Born to Invent"

posted on July 1, 2009 - 2:31pm
QUEST Vol. 16, No. 3
Ben the Book Saver

'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease

posted on July 1, 2009 - 11:06am
QUEST Vol. 16, No. 3
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.

Power chair sports are fun, but do they also provide a workout?

posted on April 1, 2009 - 10:37pm
QUEST Vol. 16, No. 2
Lauren Taylor takes control of the ball and speeds down the court.  
posted on April 1, 2009 - 4:13pm
QUEST Vol. 16, No. 2
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.