© 2023 WSHU
NPR News & Classical Music
Play Live Radio
Next Up:
0:00
0:00
Available On Air Stations

Duchenne Muscular Dystrophy Care Center Opens On L.I.

duchenneribboncutting_sbu_161011.jpg
John Griffin
/
Stony Brook University
Javier Romero, seated, Duchenne muscular dystrophy patient and namesake of Hope For Javier, is surrounded by family and Stony Brook physicians at the ribbon cutting for the Duchenne Muscular Dystrophy Comprehensive Care Center.

The first comprehensive care center to treat Duchenne muscular dystrophy in the tri-state area recently opened at Stony Brook Children’s Hospital.

Duchenne muscular dystrophy is a fatal genetic disorder that breaks down muscle and is typically found in boys.

Jennifer Portnoy, co-founder of Hope for Javier, a Long Island organization that works to help combat the disease, says, “When you have multidisciplinary care, all those doctors are working together. They’re coordinating the care. So that’s what the center will do, is that your child will be seen by all these doctors together as a team.”  

Along with medicine and therapy, the center offers social work programs and child life support services for patients and parents.