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?” 

The final story in the series covering the 2014 MDA Clinical Conference addresses helping the brothers and sisters of children with disabilities

posted on April 11, 2014 - 1:57pm
"Anything we can say about being a parent of a person with special needs we can pretty much say for being a sibling of a person with special needs," said Don Meyer, director of the Sibling Support Project based in Seattle. Meyer talked about siblings of people with disabilities at the 2014 MDA Clinical Conference in Chicago during an afternoon session titled "Specialized Care," held March 18.

Federal committee votes to add the enzyme deficiency disorder to the list of recommended conditions for which states screen newborns

posted on May 17, 2013 - 2:45pm
The Discretionary Advisory Committee on Heritable Disorders in Newborns and Children (DACHDNC) today voted to add Pompe disease (acid maltase deficiency) to a list of diseases that it recommends states screen for in newborns.

Beth and Dan Gore have a most extraordinary family. Over the past dozen years, the Brandon, Fla., couple has adopted six children with disabilities, the youngest being Manny, a 3-year-old with congenital muscular dystrophy.

posted on January 7, 2013 - 9:15am
Quest Vol. 20, No. 1
Meet Manny. He's one of six children with disabilities adopted by Beth and Dan Gore of Brandon, Fla. Three-year-old Manny — who has merosin-deficient congenital muscular dystrophy and has been in and out of the hospital due to gastrointestinal, respiratory and cardiac issues — is the subject of Beth’s fifth published children’s book, Mighty Manny.

Longtime MDA research grantee Jerry Mendell discusses his group's development of a feasible strategy for screening newborn babies for Duchenne MD

posted on May 1, 2012 - 4:39pm
An April 2012 podcast from Nationwide Children's Hospital in Columbus, Ohio, explores the implications of a recently developed strategy for newborn screening for Duchenne muscular dystrophy (DMD). The podcast is part of a Nationwide Children's series called "This Month in Muscular Dystrophy."

Students hop to help fight muscle disease, while learning core values of awareness, acceptance and assistance

posted on April 9, 2012 - 12:02pm
QUEST Vol. 19, No. 2
Hopping isn’t just for bunnies. Each year thousands of preschools, day care centers and elementary schools across the country are taken over by swarms of hopping students, all doing their part to help children with neuromuscular disease.

A big sports fan with a bigger heart, this 11-year-old is ready to speak out for MDA

posted on April 9, 2012 - 12:00pm
QUEST Vol. 19, No. 2
Bryson Foster dreams big. No, make that B-I-G. But those with big hearts usually do. "Even if you dream small, those small things can turn into big things in the end," says Bryson, with wisdom beyond his 11 years. In true sports vernacular, he adds: "Go big or go home." So, Bryson continues to dream about one day being the starting quarterback for his beloved Cincinnati Bengals, or a professional...

Life-threatening complications at birth and progress in early childhood characterize congenital MMD1

posted on April 9, 2012 - 11:26am
QUEST Vol. 19, No. 2
Concern about Cody Beam started right away. "About 12 minutes after he was born, he quit breathing while my husband was holding him," recalls Cody’s mother, Tina Beam, of Arlington, Wash. Cody, born at Providence Regional Medical Center in Everett, Wash., was "very floppy and couldn't swallow," Tina recalls. He was whisked away to the neonatal intensive care unit, where he was placed on a...