In this WXYZ-TV Detroit video shared in May 2015, we catch up with Stephen Clark and his adorable granddaughter Scarlet who was diagnosed with type 2 spinal muscular atrophy when she was 10 months old. Meet the Kingsley family and 6-year-old Brett who was diagnosed with spinal muscular…
Sometimes people who don’t know better have notions that disability and sex do not go together. Don’t tell Danielle Sheypuck that. “I’m ‘Ms. Wheelchair New York’ by night,” says the blond beauty pageant competitor. Read how Eric lives an “amazing life” despite his spinal muscular atrophy. In this PBS…
This Spinal Muscular Atrophy Support UK video shared in September 2015, shows many beautiful faces of spinal muscular atrophy (SMA) while explaining the life-threatening condition. Find out more about Eric and his ‘amazing’ life with SMA here. The describes the four different types of SMA, as well the cause of the disease.
In this WXYZ-TV Detroit video shared in March 2015, meet Scarlet and her loving family. Scarlet is a typical 2 1/2-year-old girl in many ways —  bright, funny, and very talkative — but she has spinal muscular atrophy. Meet the Kingsley family and 6-year-old Brett who was diagnosed with…
Spinal muscular atrophy affects around 1 in 10,000 newborns. Here are five frequently asked questions about the condition according to Cure SMA: Spinal muscular atrophy (SMA) is a genetic disease that affects mostly children but comes in different forms. The severe neuromuscular disease affects a person’s ability to…
Spinal muscular atrophy (SMA) is a genetic disease that affects an estimated one in 10,000 children. The severe muscle wasting disease affects the child’s mobility. As SMA progresses, and depending on the type category, the child’s muscle loss leads to inability to walk, sit unaided, swallow, and in very severe…
Research is key to improving life expectancy and quality of life for SMA patients. In this fightsmavideo video, listen to researchers and parents at the 2016 FightSMA Annual Research Conference talk about how families deal with spinal muscular atrophy. Recently, progress reports…
Approximately 1 in 10,000 newborns are affected by spinal muscular atrophy (SMA), a sever life-threatening condition that results in muscle wasting, severely impaired mobility, and shortened life span. Nine-year-old SMA type 2 patient Reagan Imhoff served as a 2015 National Goodwill Ambassador. Read more here. In this heartwarming video shared in…
1. AVXS 101 Recently, AveXis’ gene therapy candidate AVXS-101, the only gene therapy for spinal muscular atrophy currently in human testing, has been granted FDA orphan drug status for treatment of all types of SMA. It was also granted FDA breakthrough therapy designation and fast track designation. Read about it…
Diet and nutrition are extremely important to heath, especially for those who live with potentially devastating diseases like spinal muscular atrophy. What is SMA? Here’s an introduction about the disease. In this video shared by fightsmavideo in 2011, pediatric clinical nutritionist Erin Seffrood provides an important and essential…
