Identity-first language or person-first language? An individual’s choice to use one or the other is a reflection of them and the culture surrounding them. For example, I prefer identity-first language because I believe it’s important to remind society that its existing infrastructures can disable me more than my SMA.
Video Blogs
Here you will find our collection of vlogs created by people with SMA for SMA News Today. Each week, they share their personal stories and perspectives with the SMA community. Watch the latest videos below and follow us on YouTube for more.
SMA + Kidney Stones = A Recipe for Hospitalization
In this episode of the Morale Monologue, Michael discusses his recent battle with kidney stones. A few weeks ago, he was admitted to the hospital to have a kidney stone removed. He discusses the procedure and what doctors did to correct the problem. He also offers tips on what to do if you have a urinary tract infection.
Further reading
John Muir once wrote, “The mountains are calling, and I must go.” Every once in a while, that quote resonates in my heart. I am a Carolina girl who grew up in the foothills of the Great Smoky Mountains, along the rim of the Blue Ridge Parkway, and I somehow…
A European survey of people living with spinal muscular atrophy (SMA) has found that while treatment options have expanded since the first medicine was approved in 2017, patient journeys remain far from straightforward. Data from the 2025 European Patient Experience Survey on SMA Medicines, Access, and Treatment Journeys…
To say I didn’t attempt to set my complaint about a Sephora event up for success … would be a lie. If I was posting a video on TikTok, I obviously wanted people to see it. Time and effort are required to write a script, film, and edit,…
Managing a career, dating, and air travel for individuals with spinal muscular atrophy (SMA) comes down to three key tools: open communication, smart energy management, and proactive planning. These strategies were discussed during a recent webinar hosted by SMA News Today, where advocates living with the…
Another day, another trek to Gillette Children’s Specialty Healthcare. This time, though, it’s for something I’ve never done before: a cortisone injection in my right hip. For all I’ve written about chronic pain over the years, I don’t think I fully understood how debilitating it can be until just recently. It…
Another day, another devastating headline in the realm of video games. “Layoffs Leave The Future Of Xbox’s Award-Winning Accessibility Efforts In Doubt,” announces one story from the gaming news website Aftermath. The article, published on July 22 and written by a fellow journalist with SMA named Grant Stoner, details…
A community-driven campaign called SMAshing My Limits And Going Places aims to make it easier for people with spinal muscular atrophy (SMA) to find accessible places to stay when they travel. The campaign is spearheaded by Becoming Rentable, an online platform dedicated to helping people with disabilities find…
