Columns

Seeking inspiration for this week’s column, I asked: “Hey, Mom. What is a favorite memory you have of our family traditions during the holidays?” “That’s easy,” came the surprisingly immediate response. “Sugar cookies.” The two words brought…

A high-dose regimen of nusinersen — the active ingredient in Spinraza — has been recommended for approval to treat spinal muscular atrophy (SMA) by the Committee for Medicinal Products for Human Use (CHMP), a branch of…

“Sherry has big dreams!” my neurologist once told my mom while explaining the difficult decisions my medical team had to make, adding that the team was doing its best. At the time, I had wanted to become a video…

For many years, there was a quote hanging in our local zoo, but I no longer remember if it was by Edmund Burke, who (rightly or wrongly) is credited as saying, “Nobody…

Our journey was rough from the start. During a well child visit, I shared concerns that something was going on with my son, Luke (call it mom instincts). We were referred to a neurologist and then a…

It’s incredible how seemingly small changes can lead to something that turns out to be much bigger. Let’s explore this idea through my experience with SMA. In February, I moved into a new house, where we…

New treatments for spinal muscular atrophy (SMA) are helping many people live longer, fuller lives, changing what it means to grow up — and grow older — with the condition. SMA is now being managed across all stages of life, shifting care from palliative support toward long-term health and…

First in a series.  In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my…

You know that poem by Anne Boyer I love about holes? You fall into one, only to dig yourself out over weeks or months or years, only to fall into yet another hole, this one both different and familiar. Life, then, becomes a series of holes, some small…

After a “constructive and collaborative in-person” meeting with the U.S. Food and Drug Administration (FDA), Scholar Rock is now planning to once again seek approval of its muscle-strengthening agent apitegromab as a treatment for spinal muscular atrophy (SMA). That resubmission to the FDA is expected in…