Archive for October, 2010
Raising a child with SMA
A Lamar couple says they knew something wasn’t right with their baby, but just assumed she was delayed in her development. They later found out their baby girl suffered from an incurable muscular disease called Spinal Muscular Atrophy or SMA. Christie and Marty Tolson have a full-time nurse to help them with their 20-month-old daughter, Holly because [...]
In: SMA Bravos · Tagged with: Christie, Holly, incurable muscular disease, Lamar couple, Marty Tolson, sma, Zack
CT boy lives five years, starts school despite muscular disorder
FAIRFIELD, CT (CNN) – A little boy in Connecticut who wasn’t expected to live past his infancy is now happily attending kindergarten. “Basically the doctor was telling me ways to remember him before he was already gone,” said Jason Takacs of Fairfield, CT. Ethan Takacs, his son, has Spinal Muscular Atrophy, a rare genetic disorder [...]
In: SMA Bravos · Tagged with: breathing and swallowing problems, Connecticut, Ethan Takacs, Jason Takacs, Kelly Takacs, kindergarten classroom, rare genetic disorder, sma
Planet Gift Baskets Partners With The Inland Empire Lemon-Aide For Life To Find A Cure For Spinal Muscular Atrophy
Spinal Muscular Atrophy can be fatal among children in the U.S.A. Fund raisers are held throughout the year to help find a cure and support families affected by the disease. Planet Gift Baskets supports finding a cure for Spinal Muscular Atrophy by participating in the annual Lemon-Aide For Life fundraiser. Each year families from Highland, [...]
In: SMA Fund News, USA · Tagged with: degeneration of muscles, FSMA, neuromuscular disease, Planet Gift Baskets, SMA research, spinal muscular atrophy, The Inland Empire Lemon-Aide For Life
Researchers confirm prenatal heart defects in spinal muscular atrophy cases
University of Missouri professor says new concept could lead to better therapies and supportive care COLUMBIA, Mo. ? University of Missouri researchers believe they have found a critical piece of the puzzle for the treatment of Spinal Muscular Atrophy (SMA) ? the leading genetic cause of infantile death in the world. Nearly one in 6,000 [...]
In: SMA Research News · Tagged with: 000 births has SMA, Christian Lorson, Department of Molecular Microbiology and Immunology, Department of Veterinary Pathobiology, Human Molecular Genetics, infantile death, mice with SMA, one in 6, prenatal cardiac defects, prenatal heart defects, sma, University of Missouri
Winnipeg family raising money for SMA in daughter’s memory
Georgia Lucas was just five-months old when she was diagnosed with a disorder that would take her life within weeks. “Georgia suffered from the most severe type, which means she couldn’t even sit up ever,” said Kristen McDowell Lucas, Georgia’s mother. “She was never strong enough to sit up on her own.” The rare disorder [...]
In: Canada, SMA Fund News · Tagged with: Brainstem, Canada, Georgia Lucas, Glenwood Community Centre, Kristen McDowell Lucas, Lucas family, neuromuscular disease, sma, spinal cord, spinal muscular atrophy, Winnipeg
MU researchers get to the ‘heart’ of SMA therapy
COLUMBIA — New developments in Spinal Muscular Atrophy research at MU are pointing toward big changes in treatment. Spinal Muscular Atrophy is a genetic disorder that affects between 2.5 and 3.3 percent of people, according to an MU news release. According to the Spinal Muscular Atrophy Foundation, people affected by the disorder are missing a [...]
In: SMA Research News · Tagged with: Christian Lorson, healthy motor neurons, SMA therapy, SMN-1 gene, spinal muscular atrophy