Every person with SMA deserves to have comprehensive care and to know they'll be taken care of, no matter what happens, from birth to death, says patient advocate Brianna Albers.
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Tim Burton’s “The Nightmare Before Christmas” is a family favorite around here, with my brother being the biggest fan of us all. He even dressed up as the movie’s main character, Jack Skellington, for Halloween one year. This beloved stop-motion animated movie has become a pop culture icon,…
Though I’ve had 20-something Spinraza (nusinersen) injections, my latest procedure proved most eye-opening for me. For almost seven years, I’ve gotten lumbar punctures to deliver this tiny but mighty medicine directly into my lower spine. After a handful of injections, I understood the drill. I knew what to…
The insidious nature of SMA type 1 that was affecting our baby Jeffrey intensified in October 1997. While relatively calm moments occasionally appeared after a disastrous pulmonary consultation earlier in the month, Jeffrey began experiencing respiratory distress to the point of needing morphine. My frazzled mind filled with…
Although I often don’t like to admit it, I sometimes feel as though my identity has switched from person to patient overnight. The past few years have been hellish, with one health battle after another. It feels like I’ve been sidelined in my own life. But despite the seemingly…
I’ve written about how I’ve looked for my own nurses to provide my SMA care, but I don’t think I’ve been clear that I’m only assisting my home healthcare agency in its search. Over the past 37 years, I’ve used a few home health agencies and spoken with…
To say Facebook Inc.’s rebrand as Meta Platforms Inc. was controversial would be an understatement. The company’s pivot from being a social media company to a “metaverse” company — essentially, one that focuses on integrating virtual worlds with “real life” — was mocked across the…
“I wish the ring had never come to me. I wish none of this had happened.” Frodo says this to Gandalf in “The Lord of the Rings: The Fellowship of the Ring.” He laments that his journey is filled with peril and despair, and he wishes to go…
First in a series. “What was your support system like growing up?” I was on the phone with a researcher from Augustana University in South Dakota. We were discussing my transition from pediatric to adult care as someone with a disability (in my case, SMA). I’d just finished writing…
Growing up, I loved the library’s summer reading program. I’ve always been a bookworm, so logging hours of reading and being rewarded for my hobby was a highly satisfying endeavor. My favorite prizes were, of course, new books. Last year, I was thrilled to learn that this program from my…
