Bryan Steward, who lives with Becker muscular dystrophy, set out to hike the 500-mile Camino de Santiago in Northern Spain last month. As he nears the end of his journey, he checked in again with us to update us on his progress. Justin Skeesuck and Patrick Gray, two other Camino hikers whose film I’ll Push You will be released in a one-night only screening at select theaters nationwide on November 2 and will benefit MDA, respond to Bryan’s entries with wisdom from their own journey.
Pearl Burgin has faced her share of setbacks as she navigated life with limb-girdle muscular dystrophy, motherhood and higher education as an adult student. But, as she writes in this reflection on going back to school, “I am fortunate to have found a way to become a mom and a scholar. If anyone else is wondering if getting an education while living with a neuromuscular disease and raising a family is possible, I hope they consider their situation, review their options and find resources that will help. Remember not to let doubt hold you back from becoming all that you want to be. Just do what works for you. I challenged myself, worked hard, and it’s paying off. Now for the next goal: grad school.”
Monkol Lek, a researcher at Massachusetts General Hospital and the Broad Institute, both lives with and studies limb girdle muscular dystrophy. He received a research grant from MDA to improve the diagnosis of rare muscle diseases, and this fall he will open his own lab at Yale.
Ray Spooner, a certified nurse midwife who has ushered thousands of babies into the world, took the Ice Bucket Challenge in summer of 2014 to raise awareness about ALS. At the time, ALS “was just of jumble of letters to us,” said Ray’s wife of 33 years, Rae. Soon though, those letters would take on a . . .