Jeffrey Rothstein, professor of neurology and neuroscience at Johns Hopkins University School of Medicine in Baltimore, was awarded an MDA research grant totaling $300,000 over three years to elucidate the mechanisms underlying ALS (amyotrophic lateral sclerosis) caused by mutations in the C9ORF72 gene. Rothstein will use ALS patient-derived stem cells to investigate the role of . . .
Gary Armstrong, a senior post-doctoral researcher at Université de Montréal in Quebec, Canada, was awarded a development grant totaling $177,670 over three years to further understanding of the synaptic defects that occur in ALS (amyotrophic lateral sclerosis). Abnormalities arising at the neuromuscular junction occur early in animal models of the disease and very little is . . .
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 . . .
Marley Nibecker Robinson, Age 14 Mystic, CT Home and Family Marley lives with her mother Gabrielle and father Karl. She has an older brother named Cooper and loves all of her pets. Marley has a dog, a rabbit, two ducks, & three chickens. Diagnosis Marley has Spinal Muscular Atrophy II and was diagnosed when she . . .
Jessica Albanese, Age 16 New Castle, DE Home and Family Jessica lives with her parents, younger sister Victoria, and their chocolate lab. Diagnosis Jessica was diagnosed with Limb-Girdle Muscular Dystrophy in 2008 at the MDA clinic at A.I. duPont Hospital in Wilmington. Limb-girdle muscular dystrophy (LGMD) is a group of disorders affecting voluntary muscles, mainly . . .
Manny Gore, Age 5 Brandon, FL Home and Family Manny lives with his parents, Beth and Daniel, and siblings, Jacob, Kaley, Sam, Luke and Zoe. Diagnosis Manny is diagnosed with Merosin Deficient Congenital Muscular Dystrophy. At least 30 different types of Congenital Muscular Dystrophy are now recognized. School Along with his brothers and sisters, Manny . . .