Columns

Photo courtesy of Stéphanie Houvet Day 3 of 31 This is Stéphanie Houvet’s (@stefookie) story: My name is Stéphanie and I’m from France. My father is French and my mother comes from the Czech Republic; they met on holidays. I was born in…

Longtime readers of my column will know that I am fellow columnist Sherry Toh’s biggest fan. Navigating SMA alongside her has been one of the greatest honors of my life. This week, Sherry and I thought it would be fun to interview each other — not…

With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But…

Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love public speaking, the larger issue at hand is often finding…

Muscle fasciculations, or twitches, in adolescents and adults with later onset forms of spinal muscle atrophy (SMA) were detected best with a muscle ultrasound, a study concluded. Muscle ultrasound combined with a physical examination is useful for screening adolescents and adults with weakness in muscles closest to the…

SMA Awareness Month is coming up in August. The question for me is, what’s the best way to raise awareness about this disease? My thoughts are that it is best to share that sometimes life can get a little dark for those of us with SMA. Over the…

“MomMom! MomMOM!” When hollered out in glass-shattering decibels, my grandma moniker can mean anything. During my recent extensive time in charge of our grandchildren, Clara, 6, and James, 4, I’ve dashed to the scene of what sounded like emergency status more than once. One episode of Clara’s “MomMOM!”…

Among adults with spinal muscular atrophy (SMA) being treated with Spinraza (nusinersen), a decrease in levels of the inflammatory protein YKL-40 in the fluid around the brain is associated with improvements in arm and hand function, according to a new study. “We conclude that YKL-40 in CSF…

In the film “Licorice Pizza,” 20-something protagonist Alana (Alana Haim) leaps from one adventure to the next in the eccentric atmosphere of 1970s Southern California. She meets the smooth-talking teenage actor Gary (Cooper Hoffman), who’s immediately smitten with her. Together, they start a business, encounter a cast…

It’s been a minute since I put my degree in counseling to good use. Let’s change that, shall we? Last week, I wrote about a recent ghost vacation. For those who didn’t read that column, here’s the gist: I came back from this year’s Cure SMA conference with…