My life of privilege while living with SMA
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…
Community Perspectives
What I would’ve missed out on if I’d said no to life with a disability
“Thanks for inviting me on this trip,” my 9-year-old friend Forrest said to me last weekend. His parents were in the gas station convenience store, and we were alone in the car…
SMA therapy apitegromab could be available by end of year, if approved
Scholar Rock plans to have the the muscle-strengthening therapy apitegromab available commercially in the U.S. before the end of the year if the U.S. Food and Drug Administration (FDA) approves it next month…
Remembering loved ones by modeling their strengths
It surprised me to open my email one night to find a message from my colleague Michael Morale. Well, it wasn’t really from Michael. It was from his Otter, a virtual assistant that had attended a company meeting…
Why I want to be admitted to ‘The Pitt’ as a young adult with SMA
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…
SMA gene therapy being tested in mice improves their motor function
An investigational gene therapy that targets nerve cells thats’s being developed by Exegenesis Bio was well tolerated and improved motor function in a mouse model of spinal muscular atrophy (SMA), a study shows. Based on…
To find a team of caregivers, I had to rethink my ‘ideal’ criteria
In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today…
Man’s case shows how SMA muscle loss may lead to diabetes
A man with type 3 spinal muscular atrophy (SMA) and no history of diabetes developed diabetic ketoacidosis, a severe diabetes complication, which researchers said may be linked to metabolic changes. SMA can cause major loss…
What I hope you’ll understand this SMA Awareness Month
“Don’t worry, we all got the Alyssa lesson before we started working here,” the new fellow joked after having completed his second nasojejunal (NJ) feeding tube exchange on me. Though everyone in the room had a good chuckle,…