This video from Muscular Dystrophy UK is all about Hayleigh Barclay. Hayleigh is a 27-year-old woman from South Ayrshire, Scotland, who has spinal muscular atrophy (SMA) type 2. MORE: Spinraza recommended for approval in Europe Hayleigh’s passion is music and film. She just graduated with a university…
If you are able-bodied and you have a friend or family member with SMA, there are some important things to keep in mind in terms of how you can be supportive. Maybe you recently became friends with an SMA individual or you have a family member who was recently diagnosed.
Carson Berry is a Junior at Coastal Carolina University studying marine biology. Berry also has SMA type 2, and in recent years, his condition has taken a significant toll on his arm strength and upper-body strength. Whereas he used to have enough muscle strength to lift light objects and slightly…
According to Cure SMA, there are several areas of care that need to be taken into consideration when looking after a child with spinal muscular atrophy (SMA) when they have a cold. These areas include: Evaluating mucus buildup and secretion mobilization When children with SMA have a cold,…
Cure SMA has launched a series of care booklets covering a wide range of topics for SMA patients and caregivers. Their “Nutrition Basics” booklet can be downloaded as a PDF file and explains the importance of good nutrition for people with spinal…
Purchasing a new wheelchair is no easy feat. In addition to getting your insurance provider to cover the cost, you also have to make sure that the chair you are acquiring will meet your needs and has all of the proper accommodations. Read this article from the Washington Post by…
Living with SMA no doubt presents numerous challenges, but as they say, “where there’s a will, there’s a way.” A good education is just as important for SMA patients as it is for able-bodied students. Many go to public school from Kindergarten to high school, and go on to graduate…
Stella Bartlett is a little girl from Toronto, who was diagnosed with type 2 spinal muscular atrophy when she was just a baby. The gutsy 7-year-old is grabbing life by the horns, attending school and listening to her favorite music by artists like Taylor Swift, Katie Perry and One Direction.
Documentary filmmaker Gareth Burghes first heard of spinal muscular atrophy (SMA) through his father’s work as a geneticist. He soon became aware of ongoing clinical trials that were studying a breakthrough drug that might change the lives of those who have the disease. As a filmmaker, Burghes knew that he wanted…
This video from therhodeshow is all about Alyssa Silva, the star of a documentary about life with spinal muscular atrophy (SMA). MORE: Leading by example: Steve Mikita on life with SMA. According to Working on Walking, Alyssa teamed up with Animus Studios to…
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