Larry Luxner,  —

Gavin Ward, a spunky 8-year-old Arkansas boy with Duchenne, enjoys building contraptions with his Lego set and watching video games. He also walks up to 18,000 steps a day and accompanies his father, Bruce, on outings near their home in Royal, about 70 miles west of Little Rock. But what…

Either by coincidence or by design, MDA Hellas, the Muscular Dystrophy Association of Greece, is located on Elpidos Street in downtown Athens. Elpidos is Greek for “hope” — and that’s exactly what MDA Hellas offers the many neuromuscular disease patients under its care. Antigone Karras is executive manager of…

In the mythology of ancient Greece, Hermes was the god of boundaries and transitions, with the ability to move between the mortal and divine worlds. In modern-day Athens, Hermes Christos Athanasiou Gill is a cheerful, trilingual 7-year-old who likes math and enjoys playing Minecraft, a video game. He also has…

Coping with Duchenne muscular dystrophy is difficult enough in the United States. But in neighboring Mexico, people with Duchenne often face social discrimination, lack of access to the newest therapies, a financially strapped healthcare system, and general ignorance. “Very few Mexicans know anything about this disease,” said Graciela Méndez Covarrubias,…

Five years after the death of a Utah boy named Mitchell Jones, the national foundation created in his name helps families struggling with the ravages of Duchenne muscular dystrophy. Mitchell, who was diagnosed with Duchenne at the age of 3, died of heart failure on March 2, 2013, just…

Betty Vertin had never heard of Duchenne muscular dystrophy before July 8, 2010 — the day a neurologist in Omaha, Nebraska, diagnosed her son Max with the rare disease. “Will you spell that for me?” she remembers asking the doctor through her tears. Vertin was 10 weeks pregnant when she…

With so much focus on the very real dangers of muscular, pulmonary and cardiac decline, it’s easy for moms and dads of Duchenne kids to forget about less urgent issues like dental health and digestion. But they shouldn’t, said experts speaking at Parent Project Muscular Dystrophy’s recent 2018…

Never before has the therapeutic pipeline of potential treatments for Duchenne muscular dystrophy appeared so promising. Yet that also means more questions than ever. Searching for answers, about 620 people — 70 percent of them parents — converged on Phoenix, Arizona, in late June for the 2018 Annual Conference organized…

Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy…

Getting your son into a Duchenne muscular dystrophy (DMD) clinical trial can be difficult, given the narrow criteria for eligibility — like walking ability — associated with such trials. Even for families who qualify, the experience can be draining, said Pat Furlong, founder and CEO of Parent Project Muscular…