Videos and Patient Stories

No Longer a Death Sentence - Battling Duchenne MD

Duchenne MD Clinical Trial

Duchenne's Muscular Dystrophy: A Brief Introduction for Young Patients and Their Families

Jared's Story

When Jared was four years old, his mother, Tricia, began to realize that he had a delay in his speech. He was also having difficulty going up and down stairs and, sometimes, getting up off the floor. So Jared’s pediatrician suggested that he be seen by a neurologist at Strong Memorial Hospital, part of the University of Rochester Medical Center.

Tricia and her husband, Dale, took Jared to see Dr. Emma Ciafaloni, a neurologist and expert in Muscular Dystrophy. After an initial consultation, Jared was sent for blood work. The results would not be available for 4-6 weeks. Dr. Ciafaloni warned the family against doing their own research in the meantime. The test results confirmed that Jared had muscular dystrophy.

Though their life has been turned upside-down by Jared’s diagnosis—the couple struggles to create a normal life for their other son, Zach, who does not have MD—they feel thankful to have found a place that is at the very center of MD treatment and research.

We felt so lucky, Tricia says. Not every hospital has an MD clinic.

In fact, there were few places like it in the world. The University of Rochester Medical Center is home to one of three original Muscular Dystrophy Cooperative Research Centers set up by the National Institutes of Health. Patients come from around the world for its expertise in treating many forms of MD.

They’re wonderful! says Tricia. Everyone, even the registration people, they’re all so friendly.