I am on the Cutting Edge, Literally, of LGMD Research
Ralph Yaniz foudn himself on the cutting edge, literally, of LGMD research when he donated his muscle and skin cells.
Tag: Limb-Girdle Muscular Dystrophy (LGMD)
Becoming a Scholar and a Mother: Reflections from a Student with LGMD
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.”
Researcher with LGMD Aims to Bring Genetic Diagnoses to People Around the World
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.
A Father’s Celebration
Ralph Yaniz reflects on the milestones of being a father with a neuromuscular disease just in time for Father’s Day.
Raising Awareness for MDA in Her Own Fashion: Massachusetts State Ambassador Keisha Greaves Advocates in Style
31-year old Keisha Greaves of Cambridge, Mass., lives her life with flair. With a degree in fashion design and merchandising, this fashionista lives and breathes style. Keisha, who has a subtype-unknown form of limb-girdle muscular dystrophy (LGMD), uses her fashion background to bring together her two of her favorite passions: clothing design and advocacy.
Former MDA Camper and State Ambassador Named Ms. Wheelchair Wisconsin
Myranda Gereau met Ms. Wheelchair Wisconsin as a girl at MDA Summer Camp at age 8. Now, years later, she proudly wears the crown she dreamed of as a child.
Simply Stated: What is Muscular Dystrophy?
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 . . .
Woman with Miyoshi myopathy Works Hard, Plays Hard and Muscle Walks With All Her Heart
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 . . .
Five Questions with Researcher Madhuri Hegde
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: MDA’s California State Goodwill Ambassador
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 . . .
