For the last four months, Amy Shinneman has been training to do something she never imagined doing: hitting the pavement as a participant in the Bank of America Chicago Marathon. Amy, a 45-year-old Noblesville, Ind., native, lives with Bethlem myopathy, a form of Ullrich congenital muscular dystrophy that causes muscle weakness throughout her limbs. “From . . .
Even though the Martinez family lives in Burbank, Calif., within an hour’s drive to Los Angeles’ Cedars-Sinai Medical Center, their road to the hospital’s specialized clinics — to Dr. Robert Baloh and his work there — was a long one. Daniel and Gladis Martinez have two daughters: Genesis, 15, and Isabella, 14, born just 10 . . .
Computers, laptops, tablets, and smartphones have become ubiquitous features of our daily lives — but not of our healthcare. At least, not yet. But a group of physicians at MDA’s 2019 Clinical & Scientific Conference made a few convincing cases for increased use of personal electronics in healthcare and clinical trials. Dr. James Berry of . . .
Each year, so many MDA kids and their families can’t wait for MDA Summer Camp. Jennifer Allebach, MDA’s new senior vice president of Recreation and Camp Programs, can’t wait to welcome them. Jennifer joined MDA in May after a long career with Girl Scouts of the USA, where she worked in adult program development, volunteer . . .
For Dane Boersma, the best things in life were simple: a good cup of coffee, and some good people to drink it with. That was the idea behind the formation of Dutch Bros Coffee in 1992, when Dane and his brother Travis, both dairy farmers, left the dairy business with 100 pounds of coffee beans, . . .
In 13 years, MDA’s Night of Hope Gala, hosted every fall in Atlanta, Ga., has raised more than $9 million dedicated to funding critical research focused on treatments for amyotrophic lateral sclerosis (ALS). And one of the event’s biggest champions is also one of the people it benefits most. Ten years ago, Atlanta resident Ed . . .
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, . . .
It’s March, and at MDA that means only one thing: It’s Shamrocks season! Each St. Patrick’s Day season for the last 37 years, MDA has partnered with 20,000 retailers nationwide to raise a little green (more than $323 million, to be exact) both to send kids to MDA Summer Camp and to fund groundbreaking research . . .
In 1952 in South Boston, Charles Crowley was desperate for help. His two sons were living with Duchenne muscular dystrophy (DMD) and needed care. The family needed resources. Charles called a good friend, George Graney. George did what good friends do for friends who need help: He called on his friends, too. Specifically, George asked . . .