In the true fashion of a passionate actor, Neil Newbon opens a TEDx Talk by imitating an ape — a choice inspired by his role voicing the lead ape in the video game “Planet of the Apes: Last Frontier.” Throughout the presentation, he effortlessly switches between other characters…
Wandering the Lines – a Column by Sherry Toh
Last in a series. Read part one. “How are you feeling today, Sherry?” my director asked. We were about to rehearse for a play we’re working on. I’m still new to performing, and SMA makes me prone to fatigue, so before we start, she always checks on how…
First in a series. Maybe it (sadly) goes without saying, maybe it doesn’t, but if you Google “spinal muscular atrophy actor,” you won’t find a single SMA patient with a long filmography filled with recognizable projects. You’ll find Alexa Dectis, the child actor turned entertainment lawyer and one…
“Time for your whirlwind 20s, babe!” When my best friend and fellow SMA News Today columnist, Brianna Albers, said that a month ago, I couldn’t have imagined how much I would feel her words. She’d said it in the context of me wanting to meet some (admittedly questionable)…
What do my doctors and dates have in common? It’s that I’ve asked most of them this question: “Am I the first person with SMA you’ve met?” Surprisingly, I’ve heard a few doctors tell me no. I may be the first adult SMA patient they’ve treated, but they’ve seen…
I once read that fear is the other side of the coin to excitement, pleasure, or comfort. Without any research into whether the statement is true or false (it’s true), I nodded and said, “That makes sense.” Why else would people seek out horror films, roller coasters, even kink?…
There’s nothing quite like beginning a new project. It’s like falling in love with someone: Your imagination takes you on flights of whimsy, you itch and ache to have your hands on it, and there’s a possibility it will consume your life. At least for a short while. But then,…
“My SMA will weed out all of the undeserving jerks on the dating scene for me,” I once thought. Reader, I was not at all correct. Oh, how naive I was in my early 20s. In my defense, I was happily committed to a relationship with my now…
Upon diagnosis, caregivers and SMA patients are often warned to watch the patient’s respiratory system. The weakening of this most basic function of the human body is the most common cause of death for people like myself. Hence, regular pulmonary exams are done, physiotherapists are called in to teach…
“Dear God, why did you not bless me with resting bitch face?” That was my prayer on May 23, 2025. I’d been up since 8 a.m. It was past 5 p.m., and I was exhausted from a pain management nerve ablation done that day. I was on my way home…
