Columns

“I haven’t had cancer since I was 11 months old!” our cheery granddaughter recently proclaimed. Clara turned 7 at the end of December. She’s witty, imaginative, spunky, highly entertaining, candid, cute, and sharp. Sometimes, though, her facts are a bit skewed. She’s never had cancer. …

First in a series. When it comes to New Year’s, there are two types of people. Either you subscribe to the magic of a new year, or you believe there’s nothing inherently special about Jan. 1. Or maybe you’re more like me. While the optimist in you wants to…

A few years ago, I started listening to comedian Chris Gethard’s podcast, “Beautiful Stories From Anonymous People.” The premise of the show is that people call in, and whoever gets through talks with Gethard about any subject they want for an hour. The only condition is that…

I have been waiting my entire life. Waiting for someone to love me. Waiting for the snow to melt. Waiting for my skin to clear so I could leave the house without feeling like an embarrassment of a human being. Years ago, in 2019, I wrote a column about…

I’ve never been the type of person to set goals. I realize how this could be misconstrued. But the truth is I’m not lazy or unmotivated. In fact, I pride myself on being determined. I’ve always been willing to take on new challenges and write my…

Despite its well-reported benefits in motor function, the gene therapy Zolgensma (onasemnogene abeparvovec-xioi) may not be as effective at preventing or easing breathing problems at night in young children with spinal muscular atrophy (SMA), according to a small real-world study. Nighttime breathing problems were found to occur in…

“Yesterday, All my troubles seemed so far away, Now it looks as though they’re here to stay, Oh, I believe in yesterday.” Among the countless hits by the Beatles, “Yesterday,” released in 1965, has stood the test of time as one of the most revered and influential songs in…

A man in Brazil was found to have an exceptionally rare form of spinal muscular atrophy (SMA) — called SMA with lower extremity predominance, or SMA-LED — caused by a mutation in the TBK1 gene, as described in a new case report. Mutations in the TBK1 gene…

The Christmas spirit eluded me in 1997. Our baby Jeffrey, diagnosed with SMA that summer, had snagged his wings that November. Needing to find something positive, I focused on why I should be thankful. Jeffrey was in heaven, free from the ravages of SMA. I…

Children with spinal muscular atrophy (SMA) type 2 and 3 have lower health-related quality of life (HRQoL) compared with healthy youngsters, but scores are similar for both patient groups, a new study reported. While disease type was not found to impact HrQoL, some health-related quality of life measures…