Author Archives: Wendy Henderson

SMA Documentary: ‘A Thousand More’

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…

Learning More About the Faulty Gene in SMA

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…

6 of the Best Apps for Chronic Illness Management

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…

Adults With SMA: Hayleigh Barclay

  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…

Caring for a Child With SMA When They Have a Cold

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,…

SMA Stories: Meet Stella Bartlett

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.