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…
Here at SMA News Today, we try to bring all the latest research and treatment news to our readers, but we also try to highlight what life is like for those who live with the disease. Among our great team of writers is a team of columnists who share their personal…
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…
https://www.youtube.com/watch?v=rCZunn4ML5o If you’re living with a chronic illness, it’s easy to slip into a malaise and feel sorry for yourself. This isn’t a helpful state of mind and it potentially means you’re missing out on life. In this video from NewLifeOutlook, Anna Scanlon shares her five…
Caring for an infant with spinal muscular atrophy (SMA) will be overseen by many different healthcare professionals who will work together to create a detailed care plan for the patient. Initially, the family may be referred to a pediatric neuromuscular clinic and then representatives from other medical fields will be introduced. MORE: Five areas…
Share Your Blessings is a non-profit organization that specializes in helping children and adults with special needs. As part of its Project Maestro initiative, it has given away more than 750 Beamz Interactive Music Systems with a retail value of $300,000 to people with disabilities, according to…
Leaving the home when you have children with SMA can be challenging. There are many factors to take into consideration to ensure the comfort and safety of your child. MORE: Seven support care areas that can help with SMA. Dany is a mom who understands this all too well. She shares some…
The new spinal muscular atrophy (SMA) treatment Spinraza has been recommended for European approval by the Committee for Medicinal Products for Human Use (CHMP), which is part of the European Medical Association (EMA). MORE: Nine commonly asked questions about Spinraza. Biogen, the makers of the drug,…
This video from therhodeshow is all about Alyssa Silva, the star of a documentary about life with spinal muscular atrophy (SMA). MORE: Leading by example: Steve Mikita on life with SMA. According to Working on Walking, Alyssa teamed up with Animus Studios to…
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