Three-year-old Addilynne Shirey from Lakewood, Ohio loves preschool but has to be extra careful during the winter months to not catch colds and flus from the other students. These illnesses could be fatal since Addilynne has type 1 spinal muscular atrophy (SMA). MORE: Cure SMA releases booklet of insurance advice. According…
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The European song contest Eurovision has been a much-loved tradition in Europe since 1951 and is watched by more than 100 million people worldwide. This year’s Russian representative is Yuliya Samoylova who also happens to have spinal muscular atrophy (SMA). Find out what causes the genetic disease SMA here. The…
The SMA Trust has released a series of SMA stories that highlight the journey some young patients with spinal muscular atrophy have embarked on. The accounts have been written either by the patients or the parents of the children. The series aims to raise awareness of the disease and…
This MediaStorm documentary is all about Philly Mayer. Philly is a bright and happy nine-year-old boy who was diagnosed with spinal muscular atrophy (SMA) as a toddler. Learn all about the new exoskeleton designed to specifically give children who suffer from spinal muscular atrophy (SMA) a chance to…
Often one of the most frustrating things about dealing with a chronic illness is trying to decipher health insurance and what it means for you and your family. The non-profit organization Cure SMA has released a booklet offering patients and caregivers valuable advice about health insurance. Read…
In this CSIC video, learn all about the new exoskeleton designed specifically to give children with spinal muscular atrophy (SMA) a chance to stand and walk. The innovative new product was unveiled in Spain. Long-term exercise was found to benefit mice models of spinal muscular atrophy (SMA), providing important clues for…
In this video from Muscular Dystrophy UK, patients, caregivers and medical professionals talk about some of the best practices that should be adopted when it comes to the treatment and management of muscle-wasting diseases such as muscular dystrophy and spinal muscular atrophy (SMA). They explain how many…
Children with spinal muscular atrophy (SMA) may experience problems with breathing and clearing their lungs of mucus. In these instances, they may need a cough assist machine—but what is it and how does it work? What are the three main symptoms of spinal muscular atrophy? Find out here. According to…
How much do you know about spinal muscular atrophy (SMA)? It’s a genetic disease that progressively weakens the muscles of babies and small children which can lead to problems with walking, swallowing and breathing. Often babies are born healthy with no visible signs of the disease. It’s only when they fail to meet…
Last week we reported that three families in Northern Ireland were fighting for their children to receive the new SMA drug Spinraza (nusinersen). Find out how Spinraza works in treating SMA patients. Because the drug is not yet fully licensed in Ireland, the families were told that the government was…
