According to the Muscular Dystrophy Association, people living with spinal muscular atrophy (SMA) should try to engage in as many physical activities as they can without overexerting themselves. MORE: 11 function and mobility aids for people with SMA. Physical activity will not only help keep…
Sixteen-year-old Royce Jones from Indianapolis was diagnosed with spinal muscular atrophy (SMA) type 3 at 18 months old. However, Royce has steadfastly refused to let the genetic disease stop him from doing what he wants in life. If he can’t do something the standard way, then he does it the “Royce Way,”…
https://www.youtube.com/watch?v=aKuUzfZCnyE In this video from Neurology Today, Dr. Brent Fogel, an associate professor of neurology and human genetics at the University of California, Los Angeles discusses two different types of treatment for spinal muscular atrophy (SMA). MORE: Nine commonly asked questions about Spinraza. Dr. Fogel talks…
If your child has spinal muscular atrophy (SMA), then it’s likely that their care will come from different areas of health, including physical therapists, but what kind of physical therapist is right for treating your child? The American Physical Therapy Association (APTA) has come up with…
Alexander Davis is a nine-year-old boy from Tipton, Indiana who is embarking on a new journey in his treatment for spinal muscular atrophy (SMA). Alexander was diagnosed with SMA type 2 at the age of one and has just received his first injection of the newly FDA-approved drug, Spinraza (nusinersen).
The decision to screen for genetic diseases like spinal muscular atrophy or cystic fibrosis is very personal. Generally speaking, only those who are at risk of being a carrier due to a family history of SMA or a similar disease are advised to undergo screening before starting a family,…
This video from Attitude is all about 10-year-old Maija Fredrichberg from New Zealand. Maija describes herself as “a girl with a big imagination” — she enjoys all the things other 10-year-old girls enjoy doing and wants to be a pop star she grows up. She talks about her…
A neuromuscular disorder diagnosis will have a profound effect on the whole family. Younger siblings often don’t fully understand what a neuromuscular disorder is or what it means for their brother or sister. MORE: How to talk to your child about their neuromuscular disorder. It’s best to be upfront and…
The SMA community is buzzing with the news that spinal muscular atrophy has been nominated to be included on the RUSP. RUSP stands for Recommended Uniform Screening Panel and is a list of diseases and conditions that babies are screened for at birth in the U.S. The list currently includes 34 core conditions…
Having a service dog can greatly enhance the life of someone living with a chronic disease. They allow patients to regain some of their independence by helping with small everyday tasks like opening and closing doors, fetching meds, acting as a prop or support as their owner stands, switching on lights and attracting attention…
