A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where…
Columns
One useful thing SMA taught me was how to accept change
Now that a new school year is ramping up, my mom’s volunteer day care service for my niece, Lily, and nephew, Lucas, is back in full swing. My sister, an elementary school teacher, had all-day meetings…
One useful thing SMA taught me was how to accept change
Now that a new school year is ramping up, my mom’s volunteer day care service for my niece, Lily, and nephew, Lucas, is back in full swing. My sister, an elementary school teacher, had all-day meetings…
Putting yourself — your whole self — out there is a challenge
I prefer to write columns after everything is said and done. It’s why I didn’t tell you all about my dad’s cancer until I knew he was going to be OK. I write stories for…
Nerve proteins may serve as biomarkers for SBMA progression
Adults with spinal and bulbar muscular atrophy (SBMA) have elevated levels of neurofilament light (NfL) chain and glial fibrillary acidic protein (GFAP), two biomarkers for nerve damage, in the cerebrospinal fluid (CSF) that surrounds the brain and…
On either longer travels or day trips, I aim to have fun
I’ve written plenty about how hard I work to keep healthy and prevent emergencies. I work just as hard to figure out new ways to have fun, immersive experiences that can accommodate my physical…
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…
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…