Brianna Albers

Happy Friday! I wanted to make sure y’all saw this — Cure SMA is offering a new independent living assistance package for adults and teens. There’s lots of cool stuff, including smart plugs and a microphone. Check it out here.

Happy Tuesday! My latest column is a little weird — I’ve been battling a rash, probably thanks to my new headrest setup, so I wrote about skincare and the impact of SMA on hygiene. Let me know what you think!

Also, if you have any suggestions for this dang rash, hit me up. I’m at the end of my rope. Any other tips for skincare are welcome as well.

I discovered this cool website through Twitter and thought I’d share it here! Chronically Capable is “the leading career destination for chronically ill job seekers” and is free to use. I’m not actively looking for a job at the moment but I’m keeping it bookmarked for the future!

Happy May, y’all! I had a rough couple of days last week so I wrote a column about one of my favorite poems and how it helps me get through tough times.

I’m really proud of this column, especially since I wrote it in under an hour — I hope you enjoy!

Hey y’all. Long story short, I’m thinking about moving out of my parents’ place — for my sake as well as theirs. I might be able to move in with friends but I’m not sure how caregiving would work. I don’t need someone all the time, and I have plenty of government assistance to cover the pay, but I just have no idea where to start. Any thoughts?

Happy Tuesday! My second vaccine shot hit me hard, so I wrote a column about it. Thankfully, I’m more or less recovered — I wouldn’t wish it on my worst enemy.

For those who have gotten their second shot, how did it go? Any side effects?

Balancing our innate need for independence with the realities of SMA isn’t easy, but I believe it’s worth it. In my latest video for Genentech and SMA My Way, I talk independence in my own life. Let me know what you think!

Happy Tuesday!

In my latest column, I don my therapist hat and talk about a normal — if frustrating — human emotion: jealousy.

Do you ever feel jealous of folks in the SMA community? How do you cope with this emotion?

Are any of you concerned about regaining stamina post-COVID? I know we’re not out of the woods yet, but I’m worried that I’ve been home for she long that I’ll really struggle with becoming active again.

Happy Tuesday!

In my latest column, I reflect on Evrysdi and all the people who came before us. I find a lot of meaning in taking a medication that so many lived and died in anticipation of. You know what I mean?

Do you ever think about past generations and what they’d think of us now?

Has anyone experienced nighttime restlessness on Evrysdi? It’s not that I can’t sleep — I just can’t get settled and inevitably always trigger a pressure point. It started a few days after my first dose so I’m wondering if it’s related.