Spinal muscular atrophy affects around one 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…
Many people assume that palliative care is just for the terminally ill who only have a few weeks left to live, but that’s wrong:Â palliative care if for anyone who has an illness which cannot be cured. What’s it like living with a degenerative condition? Two patients tell their stories.
Often the first sign of spinal muscular atrophy (SMA) is infants failing to meet development milestones such as supporting their heads, rolling, crawling, etc. This is usually highlighted by the parents or primary care doctor during routine assessments. If babies aren’t meeting their milestones then they will undergo various tests…
Anyone with a chronic illness will testify that they spend a lot of time in the doctor’s office having blood work done. Which means getting pricked with a lot of needles, which can sometimes take two or three (or more) attempts to find a compliant vein. Here are eight notable people who…
There can’t be many people in the SMA community who haven’t heard the great news about the U.S. Food and Drug Administration’s (FDA) approval of the spinal muscular atrophy drug Spinraza (nusinersen). The drug can be used to treat SMA in babies, children, and adults. Find out how Spinraza (nusinersen) works in…
Caring for someone with spinal muscular atrophy will present many challenges along the way. As your child grows, these challenges will change and you will need to be flexible and adaptable. We’ve compiled a list of some general tips to help you with some of the milestones your child will…
Approximately one in 10,000 newborns is affected by spinal muscular atrophy (SMA), a condition that results in muscle wasting and severely impaired mobility. Read about the four different areas of SMA management. In this fightsmavideo video, listen to researchers and parents at the 2016 FightSMA Annual…
In this informative National Geographic Channel video shared by Haikal Mansor in 2011, we find out about muscles, how they work, and what can go wrong with them in the human body. Read about eight notable people with spinal muscular atrophy. The video features two people: 31-year-old Jason…
This short video from MuscleOwl shares the facts about the FDA’s approval of Spinraza (nusinersen). The approval is great news for the SMA community and gives patients and parents renewed hope for the future. Catch up on 2016’s top 10 articles about SMA. The efficacy of Spinraza in a phase 3 clinical…
https://www.youtube.com/watch?v=Fp7MQlZGpKI Approximately one in 10,000 newborns is affected by spinal muscular atrophy (SMA), a condition that results in muscle deterioration and impaired mobility. Here are eight notable people who have spinal muscular atrophy. In this Roche video shared in August 2014, computer-generated graphics explain the relevance of motor neuron cells and survival…
