Service dogs can be a great asset for people living with chronic diseases, including children and adults with SMA. MORE: How service dogs can benefit people with neuromuscular diseases. According to this article from the Boston Children’s Hospital, Vivienne, who was diagnosed with SMA just before her…
Gentle exercise has many health benefits, particularly for caregivers of patients with chronic illnesses. In this video, personal trainer Ryan Krane demonstrates some simple exercises that can help counter the effects of chronic fatigue. MORE: Here’s a list of ways you can help keep your child comfortable. Krane…
Spinal muscular atrophy (SMA) could soon be on the Recommended Uniform Screening Panel (RUSP) list thanks to a concerted effort by Cure SMA through its Newborn Screening Coalition. MORE: Newborns in North Carolina to receive free screening for SMA. A review committee for the RUSP will look…
In their most recent podcast, the team at Muscle Owl talk about the latest Spinraza news. The European Medical Agency (EMA) has approved the use of Spinraza for all types of spinal muscular atrophy (SMA), so individual countries can now begin the process of approving the drug…
Service dogs are typically thought of as necessary companions for the visually impaired, but service and therapy dogs can be incredibly helpful for those with neuromuscular disorders. As well as being a trusted friend, service dogs can expand owners’ motor abilities, granting them new independence and allowing them to get more out of…
Finding out your child has a neuromuscular disorder is an incredibly difficult time for the whole family. It’s perfectly normal to feel a range of emotions, from anger to guilt, depression to denial, as you come to terms with what the future holds. Many parents will go through a period…
Having spinal muscular atrophy (SMA), you’ll might need to protect your lungs from being further irritated by unhealthy air. We’ve put together a list of ways to help protect your lungs against unhealthy air using information from the American Lung Association. Check the daily air pollutant forecasts. …
In this video from NBC News, see how a robot is changing the way children with disabilities attend school. 11 function and mobility aids for children with SMA. Maeve has spinal muscular atrophy (SMA), and when she’s too sick to attend class in person, the…
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. MORE: …
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…
