Muscular dystrophy is a term that refers to a number of diseases that cause progressive loss of muscle mass resulting in weakness and, sometimes, loss of mobility. There are many different kinds of muscular dystrophy, each affecting different groups of muscles. In some types of muscular dystrophy, symptoms begin in childhood. In other forms, symptom . . .
Melanie Carson has peered into the Grand Canyon and craned her neck looking up at the giant Redwoods of Northern California. She’s felt the mist of waterfalls in Hawaii and gazed at Yosemite’s Half Dome. She’s done it all, and wants to do more. That’s all while living with a rare type of Limb-girdle muscular . . .
Madhuri Hegde, associate professor in the department of human genetics at Emory University in Atlanta, was awarded an MDA research infrastructure grant totaling $300,000 over a period of three years to continue groundbreaking work to identify and characterize new gene defects that can cause limb-girdle muscular dystrophy (LGMD). In the era of precision medicine, it . . .
Meet Sylvia Hometown: Oakland, CA Age: 15 Diagnosis: I was diagnosed with Bethlem myopathy. Bethlem myopathy is a type of limb-girdle muscular dystrophy—a group of disorders affecting voluntary muscles, mainly those around the hips and shoulders. Favorite School Subject/Activities: My favorite subjects are leadership and geometry. Favorite People: My favorite person is Ellen DeGeneres and I also love my dogs Ronnie and . . .
Since its inception, MDA has invested more than $1 billion in neuromuscular disease research to uncover new treatments and cures. In 2016 alone, MDA awarded 66 new research, development and research infrastructure grants with a total funding commitment of more than $17 million. These and other MDA grants fund research projects designed to uncover the . . .
This summer MDA challenged our families, friends, sponsors, staff and others around the nation to share their stories about living life without limits despite the challenges of neuromuscular disease. Some shared moments tied to pursuing an education or career that was thought to be out of reach. Some talked about skydiving, hiking or running . . .
Paul Robertson can tell you how falling down can change the course of your life, twice—for worse and for better. For many years, he experienced a series of trips and stumbles, small difficulties getting around and a propensity to catch his feet and toes. His sister Nicole, 11 years younger, had similar tendencies. Maybe they . . .
At the age of 2, Lorraine Woodward was diagnosed with limb-girdle muscular dystrophy (LGMD), and doctors told her parents that she would not live past 16 years old. Now, at age 54, she has more than outlived those early predictions and made a successful life as a wife, mother, volunteer and entrepreneur. From an early age Lorraine . . .
Thirteen-year-old Dana Parrott has a live unlimited motto, which she faithfully follows. “I may have muscular dystrophy,” she says. “But muscular dystrophy don’t have me!” In so doing, Dana is showing the world that her limits don’t define her. To every doubter and every “you can’t do that,” she says, “watch me.” Diagnosed with limb-girdle muscular dystrophy (LGMD) . . .