The more I do with MDA, the more I learn about all that MDA is doing behind the scenes for our families. The 2016 Clinical Conference is a great example. The conference convenes world-renowned medical professionals to share best practice and discuss research advances — all for the benefit of MDA families. To attend as . . .
One of the best parts of being MDA’s National Goodwill Ambassador is getting to travel the country to places I’ve never been before. Visiting Daytona Beach, Florida, to attend Harley-Davidson’s legendary Bike Week allowed me to indulge my deep love of warm weather, palm trees and beach-side al fresco dining. As a Colorado resident, I’m . . .
Jeramiha Hometown: Weston, West Virginia Age: 14 Diagnosis: Duchenne muscular dystrophy (DMD), a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy. Favorite School Subject/Activities: I love anything to do with sports! Favorite People and/or Pets: I live with my mom Ashley, stepdad Daniel, and siblings Dakota, Jayleigh, and Malik. . . .
Grace Hometown: Middletown, Delaware Age: 15 Diagnosis: I was diagnosed with myotonia congenita in 2006 at the MDA Clinic at A.I.duPont Hospital. Myotonia congenita is an inherited myopathy, a disease that causes problems with the tone and contraction of skeletal muscles. Favorite School Subject/Activities: Digital arts, music, and literature. Favorite People and/or Pets: I live with my parents, . . .
Like most recent college graduates preparing to enter the “real world,” I was in the throes of the inevitable what-the-heck-am-I-going-to-do-with-my-life panic when an unexpected call set me on a new path. In accepting the offer to become the first adult MDA National Goodwill Ambassador, I could stop speculating about what my next life journey will . . .
Home and Family Reagan, 10, is the daughter of Jenny and Joe Imhoff. She is from New Berlin, Wisconsin. Birthday May 11, 2005 Diagnosis Reagan has spinal muscular atrophy (SMA type 2), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Type 2 SMA is a progressive muscle disease . . .
Lily Joy Bamberg, Age 11 Centreville, AL Home and Family Lily Joy Bamberg was adopted from Inner Mongolia, China at the age of 7. Lily lives with her parents, Trent and Kristie Bamberg, and has 3 siblings: Mary Ashtyn (16), Reece (13), and Ava (10). Diagnosis Approximately 3 months after her adoption, Lily was diagnosed . . .
Matthew Christopher Allen, Age 8 Lee’s Summit, MO Home and Family Matthew lives with his parents, Nick and Vanessa, older brother and younger sister. He has two dogs, Cinnamon and Kaycee, and a cat, Kaydee, who is his favorite. Diagnosis Matthew was diagnosed at the age of 5 with Mitochondrial Myopathy and Primary Neuromuscular Disease . . .
Alice McConnell, Age 11 Anchorage, AK Home and Family Alice lives with her parents and two brothers: John (who has Duchenne) and Daniel. Diagnosis Alice was diagnosed with Female Manifesting Carrier Syndrome Duchenne Muscular Dystrophy at age 6. School Alice is in 7th grade and enjoys Math and Science. Interests Alice’s interests include piano, choir, . . .
Alexis “Lexi” Noland, Age 15 Glendale, AZ Home and Family Lexi is the daughter of Casey and Keia Noland. She has three sisters and one brother. Diagnosis Lexi has Charcot Marie Tooth which is a group of hereditary disorders that damage the nerves in your arms and legs (peripheral nerves). School Lexi is a freshman . . .