Our Forums moderator Kevin Schaefer published his list of entertainment options, perfect for these odd times we’re facing. To discuss, add more recommendations and leave your feedback please join the conversation in our Forums: click here. 1) If at Birth You Don’t Succeed by Zach Anner If…
My name is Michael Morale. As director of multichannel content for BioNews Services, my job is to bring engaging multimedia content to all of our rare disease communities. I would like to introduce some of the resources available to our SMA News Today forum members, as well as…
By Michael Morale, BioNews Services’ Director of Multichannel Content Most people go to physical therapy because they’ve suffered an injury or are recovering from surgery. Previously, those of us with spinal muscular atrophy (SMA) were told not to do physical therapy because stressing our muscles to make them stronger…
The SMA News Today forums section of this website https://smanewstoday.com/forums/ launched in January 2018, and it now has close to 300 members. This platform exists so that people in the SMA community can connect with each other, ask questions,…
In addition to providing a space for SMA patients, parents and caregivers to talk about their daily lives and ask each other questions, the SMA News Today forums are also designed so that the SMA community can discuss the latest news regarding research and treatments. Specifically, the research and development…
Medical costs are expensive, especially for patients with spinal muscular atrophy (SMA). If you’re unable to work, and thus keep a steady income, you may find it difficult to pay your bills and fees. However, for those in the U.S., programs like Medicare and Medicaid might help to…
Since the launch of the SMA News Today forums, SMA patients and caregivers from all over have taken part in various discussions pertaining to life with spinal muscular atrophy. Topics that have so far been covered include acquiring assistance in college, disability and dating, using feeding tubes, having able-bodied siblings…
On Sunday, February 4, 2018, a feature-length documentary about SMA News Today columnist Alyssa Silva will air on ESPN 2. The film, Dare to be Remarkable, chronicles Silva’s life with SMA, as well as her lifelong love for the New England Patriots. Silva has been filming this documentary since…
Kevan Chandler, founder of the nonprofit organization We Carry Kevan, made national headlines in 2016 when some of his closest friends carried him on a specialized backpack across Europe. Chandler has SMA type 2, and since returning from his Europe expedition he’s written a book about the experience and helped…
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…
