Hugo Trevino is a prominent spokesperson within the SMA community, and currently works as a resource specialist for the Muscular Dystrophy Association. After completing his undergraduate degree at the University of Illinois, he’s now pursuing a Master’s degree at Loyola University in Chicago. The following is an interview with Hugo,…
The nonprofit organization Living Beyond Boundaries Inc. recently celebrated its one-year anniversary. Based in San Jose, California and founded by Greg Landers, this organization aims to provide things like life coaching and vocational training for people with disabilities all around the world. MORE: Online volunteering opportunities for SMA patients…
I was maybe 4 or 5 years old the first time I saw the original “Star Wars” trilogy. It was a VHS set, and I still remember the old-fashioned covers that featured characters like Yoda and Darth Vader. For those of you ultra-millennials out there, VHS tapes are…
In the latest episode of the SMA News Today podcast, Josh Garrison shares his perspective as an Amazon employee who lives with SMA type 2. Garrison is a graduate of the University of Houston with a degree in supply chain management, and has been with Amazon since 2016. He…
As Christmas lurks around the corner and everyone is hustling and bustling for last-minute gift deals, I’m reminded that this time of year requires extra preparation for myself as well. The holidays are great, but it’s the weather that accompanies this season that I have to handle with…
According to a 2016 study published by Sleep Medicine, about one in six young people with SMA types 2 and 3 exhibit some kind of sleep disorder. As the muscles deteriorate in SMA patients, breathing difficulties and trouble sleeping are common side effects. Nevertheless, there are ways to manage…
Having SMA comes with numerous challenges, but one of the best ways to make things more manageable is to engage with the SMA community. While things like the annual Cure SMA conference are great, it’s important to stay active in the community year-round. To help guide you, here are three…
At the time of this writing, I’m halfway through my Spinraza (nusinersen) loading doses. As I mentioned in a previous column, I’m receiving mine through the neck instead of doing the standard spinal tap injections. It’s certainly not for everyone, but it’s worked great for me.
The winter can be a challenging time of the year for SMA individuals. Not only do cooler temperatures make it difficult for any wheelchair-user to move their hands and drive, but it’s also important to take extra measures to prevent colds. To help make this season more manageable, here are…
We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I…
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