Columns

If it’s not my mom rocking out to “The Final Countdown” by Europe, it’s my dad reminiscing about all the cartoons we used to watch. Shows like “Arthur” and “Dragon Tales” were mainstays in the Albers household. But my favorite was “Cyberchase,” an after-school program about a bunch of…

“OK, SMA. You win,” I thought after signing off from a virtual meeting. I didn’t know how it was possible to feel so defeated yet relieved about finding a solution for one of my recent health woes. But there I was, staring up at my ceiling and arguing…

Older children with spinal muscular atrophy (SMA) type 2 or 3, ages 2–5, given a single injection of Zolgensma into the spinal canal, showed clinically meaningful gains in motor function after one year, according to final data from the STRONG study. Such gains also were significantly better…

I know I talk a big game when it comes to advocacy and setting goals for myself. The great results I achieve may lead some people to think that my efforts are effortless, but of course they never are. Surprisingly, though, some things in my life with…

As I tallied the sea of tiny numbers on my tax spreadsheets, I decided to search for some background music on my computer. I love my computer — a gift from my generous family in 2020 — but it doesn’t have a CD drive. Almost all of…

A common tendency among women and girls is to feel like we’re not enough. This insecurity is threaded throughout the media we consume. Netflix’s “One Day at a Time,” a sitcom featuring three generations of Cuban American women, comes to mind, as does the 2004 high school film…

“A hero — not the hero we deserved, but the hero we needed.” This line from a Batman movie aptly describes the life and legacy of Judy Heumann. The prominent disability rights activist, who died March 4 at the age of 75, remains a hero in…

If there’s one thing my dad and I can agree on, it’s that mornings are the worst. My mom, on the other hand, is a veritable morning person. She wakes up energized and ready to conquer the world. By the time I drag my sorry butt out of…

I still remember exactly what I was doing when news broke that Evrysdi (risdiplam) had been approved by the U.S. Food and Drug Administration (FDA) in August 2020. Up until that point, it had been a pretty ordinary day. It took only a moment to become…

A year of treatment with Evrysdi (risdiplam) was safe and boosted levels of SMN — the protein that’s deficient in spinal muscular atrophy (SMA) — among previously treated patients, according to published Phase 2 trial data. The safety profile was deemed similar to that observed in trials testing…