Last week, I had the opportunity to attend the 2018 MDA Clinical Conference in Arlington, Va., to write about it from the patient’s perspective. I am always excited to attend conferences that bring together stakeholders in the neuromuscular disease community. I love meeting fellow patients, and I especially love learning about the latest scientific and . . .
Amin Lakhani is a 29-year-old man with CMT. After graduating second in his high school class of 700 students, getting two degrees from an Ivy League university and landing his dream job at Microsoft, he thought he had finally made it. But something wasn’t right because he felt completely alone. He hadn’t learned how to . . .
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.