Lindsay Cochran, Age 11 Gardner, KS Home and Family Lindsay lives with her mom and dad, Tracy and Walt, and brother, Trenton. Diagnosis Lindsay was diagnosed with Spinal Muscular Atrophy Type 2 in May 2004, at 8 months old, and relies on a power wheelchair for all of her mobility. Spinal muscular atrophy (SMA) is . . .
Rivers Lacrouts, Age 11 Metairie, LA Home and Family Rivers lives in the Greater New Orleans area and has a pet dog named Raven. He is a happy spirit and is very well-spoken. His mom says he has never met a stranger! Diagnosis Spinal muscular atrophy (SMA) is a genetic disease affecting the part of . . .
Liam Rust, Age 12 Sparta, NJ Home and Family Liam lives with his sister Emma, and parents Laura and Bill Rust along with his cats and dogs. Diagnosis Liam is diagnosed with Spinal muscular atrophy (SMA). It is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age . . .
Christopher Hay, Age 8 Hubbard, OR Home and Family Christopher is the son of Tammy and James Hay. He has one older sister, Emily. Diagnosis Christopher has Spinal Muscular Atrophy (SMA) Type 2. He was diagnosed in September of 2007. SMA is a genetic disease affecting the part of the nervous system that controls voluntary . . .
Carlee Weber, Age 12 Williamsport, PA Home and Family Carlee lives with her mom Nicole, stepfather Keith, brother Chase, stepsister Morgan, 2 cats and 2 dogs. Diagnosis Carlee was diagnosed with Spinal muscular atrophy (SMA). SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. The age at . . .
Bryant “B.J.” Bond, Age 12 Stafford, TX Home and Family BJ lives with his mother and miniature poodle, Cinnamon. Diagnosis In 2005, he was diagnosed with Spinal Muscular Atrophy Type III, at Texas Children’s Hospital, an MDA Clinic in Houston. Spinal muscular atrophy (SMA) is a genetic disease affecting the part of the nervous system . . .
New Berlin fourth-grader continues to advocate for MDA through historic awareness program CHICAGO, Jan. 8, 2015 — Reagan Imhoff spent 2014 jet-setting across the country, capturing the hearts of many as the face and voice of the Muscular Dystrophy Association — and now the 9-year-old will return as the 2015 National Goodwill Ambassador. Video: Meet Reagan . . .
Jacob Smith, Age 13 Burlington, WI Home and Family Jacob lives with his mom Bobbi Ann, dad Kerry, and sister Jessica. Jacob’s dog Minnie is small enough to ride with him in his power wheelchair! Diagnosis Jake was diagnosed with Spinal Muscular Atrophy Type 2 at 14-months of age. Spinal muscular atrophy (SMA) is a . . .
Press Release: Continued increases observed in multiple measures of muscle function in SMA children treated with ISIS-SMN Rx Statement from MDA Scientific Program Officer Amanda Haidet-Phillips, Ph.D.: “We are excited to see that Isis Pharmaceuticals reported positive results from patients who were enrolled in their Phase 2 trial and who continued to receive the drug after the . . .
On June 11, Isis Pharmaceuticals, Inc. released an update on its ongoing open-label Phase 2 clinical study of ISIS-SMNRx in infants with Type I spinal muscular atrophy (SMA). The data showed that infants treated with ISIS-SMNRx have shown continued increases in median event-free survival, positive results in muscle function tests, and attainment of important developmental . . .
