I’d just survived a car accident in Phoenix while road tripping with my parents from our home in Minnesota to the 2022 Cure SMA conference in Anaheim, California. (Long story short, my dad ran over a particularly nasty curb in a gas station parking lot. Any other vehicle…
The Wolf Finally Frees Itself - a column by Brianna Albers
In another world, I am my mother’s daughter, waking with the sunrise and heading to bed no later than 9 p.m. But in reality, I take after my father, who sees early risers as the enemy to end all enemies. We both hate mornings with a passion, and have designed…
Note: This column describes the author’s own experiences with Evrysdi (risdiplam). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. On our way home from the annual Cure SMA conference, I told my mom, “Wouldn’t it be funny if…
I didn’t even know about the “Barbie” movie until I saw people talking about it on social media. I watched the trailer and thought, “That looks like a funky little movie.” But I wasn’t particularly enamored with it. I figured I’d watch it once it hit streaming services,…
The older I get, the more easily I cry. It never used to be that way. I didn’t cry at movies. I definitely didn’t cry when I was happy. Crying was terrible, and I hated every second of it. Now I cry at the drop of a hat. Tense conversations…
It didn’t take long for my mom — who, in her own words, is not “retired” but “reliving” — to take advantage of her surplus of free time. Days after settling into the next stage of her life, she started me on a new exercise regimen: regular 15-minute walks,…
As hopeful as I was when starting naturopathy, I didn’t actually expect anything to come of it. Desperate for relief and having tried everything else, I decided it was worth a shot. At the least, I could return to my doctor with the hopeless certainty of someone who has…
I woke up to a text from my friend Sherry: “Babe, you should try this new accessibility tool that just came out. It might help you game!” When it comes to video games, Sherry is the smartest person I know. She freelances as a journalist in the gaming industry…
Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I was expecting my insurance to turn up their nose at renewing my Evrysdi (risdiplam) prescription to treat my SMA.
My dad and I have a long-standing tradition of rewatching old TV series. We’ve binged everything, including “Merlin,” “Stargate SG-1,” and “Star Wars Rebels,” over the years. Right now, we’re savoring every single episode of “Agents of S.H.I.E.L.D.” for the third time. “Agents of S.H.I.E.L.D.” premiered in 2013,…
Recent Posts
- Scientists find molecule that may protect nerve cells in SMA
- Looking forward to the new year with more confidence than ever
- Motor unit changes track with SMA severity, new study shows
- SMA community honors legacy of disability rights activist Alice Wong
- Teamwork and faith helped my parents raise children with SMA
