Author Archives: Brianna Albers

My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to…

My first Evrysdi-versary passed without incident. Ironic, considering how much time and effort I put into acquiring the medication. A disease-modifying treatment (DMT) for SMA is no small thing. Spinraza (nusinersen) took the community by storm, with patients around the world petitioning their insurance companies. I wasn’t immune to…

Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of…

Last Sunday, my dad took me by surprise. “I don’t have anything planned for today,” he said as he helped me get out of bed. “Let’s do something fun.” I assumed he meant something simple, like getting ice cream or dropping by the grocery store for a bouquet of…

When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my defense, I was in the midst of a major depressive…

When it comes to new wheelchairs, I’ve been known to drag my feet. My parents love to tell the story of how my last chair sat in our basement library for a year after I got it. In my defense, I was in the midst of a major depressive…

It all started so innocently. Let me start with a clarification: I did not fall prey to a multilevel marketing scheme. I will not barge into your DMs with “an opportunity” — or, in other words, a “proposal” — that will benefit the both of us. I’m not trying…

Like most things when it comes to Sherry, it was a no-brainer. A few weeks ago, I woke to a string of messages in our shared Discord server. An SMA News Today columnist, she’d been asked to participate in this year’s Rare Disease Day (RDD) panel, organized…

I always knew I was rare. From the motorized wheelchair to the feeding tube, there’s no mistaking me for normal. No matter how hard I try to blend in, I always stand out, to the point where I’ve pretty much given up. Why pretend to be something I’m not?…

Every 28 days or so, I convince myself that I’m dying. If you’ve read my column before, you’ll know that I have a complicated relationship with death, which is to say I see it everywhere. Years ago, when I first started writing for SMA News Today, I thought I…