Columns

“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…

The RNA-binding protein Mid1 increases levels of the mutated androgen receptor (AR) that drives nerve cell degeneration in spinal and bulbar muscular atrophy (SBMA), a new study shows. Since Mid1 is expressed mainly in lower motor neurons, the nerve cells mainly affected in SBMA, the study’s researchers proposed…

It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers,…

No new safety signals related to Evrysdi (risdiplam) were documented in a compassionate use program in Germany where more than 100 people with spinal muscular atrophy (SMA) were treated with the oral therapy prior to its approval last year, a new study reports. “We present the first…

From my perspective, the typical path to becoming a journalist looks like this: First, you enter the formal education system and learn what you can from kindergarten till high school. Then, you try to figure out what you’re going to do with your life for the next several decades.

Two years of training with a wearable cyborg hybrid assistive limb (HAL), combined with leuprorelin therapy, markedly improved the walking abilities of a man with spinal and bulbar muscular atrophy (SBMA), a case study reports. “This report describes the first successful case in the history of SBMA treatment…

“Sometimes I pretend I’m dead.” This sounds like the lead-in to a particularly macabre joke. But in actuality, it’s a personal practice with the potential to revolutionize our approach to self-care. My friend Andrea Hannah calls it a “ghost vacation.” “Sometimes I pretend I’m dead,” Andrea likes…