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…
Finding out your child has a neuromuscular disorder is an incredibly difficult time for the whole family, but you adjust quickly. While your child’s unlikely to realize they’re different from other children when they’re young, they’ll start to question why they’re different from their peers and siblings as they get older. MORE:…
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…
On April 18, Cure SMA hosted a patient-focused drug development meeting with the Food and Drug Administration (FDA) to highlight the needs of spinal muscular atrophy (SMA) patients and their caregivers. The video shows the day in full, covering all the…
Get regular updates to your inbox.