This MediaStorm documentary is all about Philly Mayer. Philly is a bright and happy 9-year-old boy who was diagnosed with spinal muscular atrophy (SMA) as a toddler. MORE: Learn all about the new exoskeleton designed to specifically give children who suffer from spinal muscular atrophy (SMA) a chance…
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. MORE: 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 motor…
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you manage…
Spinal muscular atrophy (SMA) is a genetic disease where, over time, the muscles become weakened. In cases of SMA type 1 and SMA type 2, weakened chest muscles affect the child’s ability to breathe, so you will need to have some items of respiratory equipment in your home so that you…
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…
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…
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…
