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 . . .
Hannah Grace Thomas, Age 12 Fayetteville, AR Home and Family Hannah has a loving family including her Dad Mark, mom Mary, and sister Chelsea. She also has many aunts, uncles, cousins and her beloved dog Michi. Diagnosis Hannah has Charcot Marie Tooth, which causes damage to the peripheral nerves and relay sensations, like pain and . . .
Alexander (Zander) Vargas, Age 9 Sacramento, CA Home and Family Zander is the son of Jennifer and Antonio Vargas. Has one brother, Antonio. Diagnosis At age 6, Zander was diagnosed with Congenital Muscular Dystrophy (CMD), which at this time is grossly affecting his digestive system and bones, causing early onset osteoporosis. School Zander is currently . . .
Zoe Grisez, Age 13 Colorado Springs, CO Home and Family Zoe is the daughter of Mark and Lorraine Grisez. Diagnosis Zoe was diagnosed with SMA Type II in December of 2002. Spinal muscular atrophy (SMA) is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age at which . . .