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…
Get regular updates to your inbox.
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…
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…
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…
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…
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…
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…
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…
“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…
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…
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…
Get regular updates to your inbox.