The Powerhouse With the Power Chair: Meet Kierra, MDA’s North Carolina State Ambassador
She’s always been a whirlwind. But Kierra’s new power chair has turned that whirlwind into a tiny tornado.
Tag: Congenital Muscular Dystrophy (CMD)
Building a Better Future with Shamrocks: Meet Shamrockstar Natalie, the Budding Architect
Over the past 35 years, the MDA Shamrocks program has raised more than $300 million to help save and improve the lives of families living with muscular dystrophy. Get to know Natalie, who graces the 2017 green MDA Shamrock with her sister Avery.
Life Is About the Journey: 15-Year-Old With CMD #LivesUnlimited
When opportunity knocks, 15-year-old Justin answers. Born with CMD, Justin has traveled to China, been on a 500-mile bike ride across Iowa, and even modeled in a fashion show. How? Justin always says, ‘Yes.’ That’s how he lives unlimited.
Why Multidisciplinary Care Matters
Clara was 2 years old when she was diagnosed with congenital muscular dystrophy. Her family was referred to their local Minneapolis MDA Care Center, and when they got there, Clara’s mom, Becky, says it felt “a bit like coming home.” Our MDA Care Center is a huge gift for us as working parents managing a . . .
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 . . .
MDA Grants Work to Find Breakthroughs Across Diseases
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 . . .
New Research Grants Aim to Help MDA Families Live Unlimited
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 a . . .
From Surgery to Summer Camp: Ohio Girl With MD Lives Unlimited at MDA Camp After Surgery
Happy shrieks erupted from the crowd as Payton Smotherman was wheeled into the mob of campers. “As soon as I pushed her into the group of people in her wheelchair, like four or five people all saw her and recognized her at once,” says Angela, Payton’s mom. She chuckled as she recalled diving out of . . .
Santhera’s Congenital Muscular Dystrophies Drug Omigapil Receives FDA Fast Track Designation
The investigational drug omigapil, under development by Santhera Pharmaceuticals, has received U.S. Food and Drug Administration (FDA) Fast Track designation for the treatment of congenital muscular dystrophy (CMD). Preclinical studies in disease models have shown the drug inhibits cell death and reduces body weight loss and skeletal deformation while increasing mobility and improving . . .
For this Connecticut Family, Finding a Cure Means Giving Back
For Cheryle Elliot and her son, Dakota, the Muscular Dystrophy Association is like a part of the family. From selling MDA Shamrocks to attending their local MDA Lock-Up event to participating in Muscle Walk, they do it all — with Dakota smiling and laughing all the way through. Dakota was born with congenital myotonic muscular . . .
