Since the early 1950s, not long after the Muscular Dystrophy Association’s formation, America’s young people living with muscular dystrophy and related neuromuscular diseases have stepped forward to share their stories, raise awareness of the need for treatments and cures for rare diseases, and represent MDA’s mission with humanity and grace. More than 40 MDA National . . .
Twin brother and sister Michael and Amy Schleicher’s story starts where a lot of kids’ stories do. They looked up to their big brother, Matt, and when he did something cool, Michael and Amy wanted to do it, too. In the case of the fateful summer that would point the twins in a long-term direction, . . .
Former NFL great Dwight Clark died from ALS (amyotrophic lateral sclerosis) on June 4, a little more than one year after revealing he had the disease. Clark was immortalized when he caught the winning touchdown pass in the NFC Championship Game in January 1982, sending the San Francisco 49ers to their first Super Bowl. The . . .
In 2015, Illinois native Rob Besecker hiked to the base camp of Mount Everest, an impressive physical feat that only a few thousand achieve in a given year. Reaching this campsite 17,500 feet above sea level is a grueling challenge that requires weeks of hiking through rough terrain and thin air. Yet for Rob, 43, . . .
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.