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…
Spinraza (Nusinersen) was approved by the FDA in December 2016 for the treatment of children and adults with spinal muscular atrophy (SMA). It’s had the SMA community buzzing the world over, but as the drug becomes available in more countries, there are some common questions that keep coming up. According to…
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 to…
In this HuffPost video, artist Dwayne Szot shares his amazing painting invention. Szot wanted children with disabilities to experience the joys of art but knew that many could not hold pens or brushes. With his artist mind at work, he fashioned a way for kids to make colorful art using their own…
In this Fight SMA video, Dr. Nanci Yuan talks about the role of cough-assist machines in the treatment of children with spinal muscular atrophy (SMA). She explains that the cough-assist machine is used primarily for two functions: to clear mucus and for chest expansion. MORE: The answers to five of the…
Many medications and therapies for spinal muscular atrophy (SMA) need to reach the spinal cord to be effective. However, this can be quite difficult to achieve as many medications have trouble crossing the blood-brain barrier that protects the spinal cord. Some drugs and therapies are able to cross the barrier, but others such…
Speech-language pathologists (SLPs) or speech-language therapists (SLTs) do much more than help people with speech problems such as stuttering or mispronouncing words. For children and adults with neuromuscular disorders like spinal muscular atrophy (SMA), muscular dystrophy (MD) and amyotrophic lateral…
According to the Muscular Dystrophy Association of New Zealand, there are some vaccinations that all people who have a neuromuscular disorder should have on an annual basis, as well as other considerations to make about vaccinations. MORE: Spinal cord delivery options for SMA drugs and treatments…
The following videos show how people living with muscular dystrophy (MD) and spinal muscular atrophy (SMA) can smash the stereotypes associated with having a disability, and lead rich and full lives. MORE: Talking to family members about your child’s neuromuscular disorder First up is 35-year-old Michael Klinkhamer, who has Becker…
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,…