Spinal muscular atrophy (SMA) is a rare genetic disorder that affects around one in 10,000 babies. The severity of the disease varies, but children with SMA are usually unable to walk and after time, muscle degeneration can affect their ability to sit, swallow and breathe without assistance. Diagnosis of the…
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Caring for a child with SMA is not only taxing on a family emotionally and physically, but it can also be quite taxing on your finances. Even if you have great health insurance (which let’s be honest, is rare), having a full-time caregiver can be incredibly expensive—whether that’s an outside…
This video from CTV News features the Bartlett family from Ontario, Canada. Sarah and Myles Bartlett are understandably excited about Spinraza and the potential the new drug has to treat their daughter Stella, who was born with spinal muscular atrophy (SMA). However, they’re still waiting for the drug to approved…
It can sometimes be a challenge to look on the bright side when you have a chronic illness, but spending time doing things that make you happy will help keep depression at bay, help you come to terms with your illness better and begin enjoying life again. To help you feel happier,…
There are just four families in Northern Ireland who are affected by spinal muscular atrophy (SMA), three children have type 1 and the fourth has type 2. Find out more about the SMA treatment Spinraza. The BBC reports that although nusinersen (Spinraza), the new treatment for SMA, has been…
Spinal muscular atrophy (SMA) is a genetic neurogenerative disease which affects approximately one in every 6,000 to 10,000 children. It is caused by mutations in the copy of the SMN1 (survival motor neuron 1) gene and leads to muscle deterioration, the severity of which varies depending on the type of SMA the…
Learning that a loved one has a chronic illness is devastating, and even more so if that illness is likely to cut their life short. Everyone deals with the death of loved ones differently, the grieving process is varied and there is no wrong or right way to go about…
If your child has recently been diagnosed with SMA, there’s probably just one question on your mind: why? The emotions and questions will change over time, but it’s quite natural to immediately wonder why this happened to your family or if there was something you could have done as a…
Cure SMA is a non-profit organization committed to helping patients and the family of people with spinal muscular atrophy (SMA). When a patient is diagnosed with SMA, it can be an extremely difficult time for their family. They’re often confused, uncertain about the future and have no idea where to turn…
Aviana McElwee from Darwin, Australia, was just a few months old when her doctor realized she was having problems reaching milestones. Tests later confirmed that she had spinal muscular atrophy (SMA). According to a report from abc.net.au, Aviana is the ninth baby in the world to receive the drug nusinersen (Spinraza) for…
