Columns

Of the 43 years that I’ve been on my SMA journey, home health nurses have accompanied me for 39 years. I know a lot about home healthcare, particularly how registered nurses and licensed practical nurses work in…

ARD-1676, a medication that works by tagging toxic proteins for destruction in cells, promotes clearance of the androgen receptor (AR) protein, which is faulty and clumps in spinal and bulbar muscular atrophy (SBMA), a study found. Earlier approaches…

The 2023 film “American Fiction” follows a frustrated writer named Thelonious “Monk” Ellison (portrayed by Jeffrey Wright). While his books receive critical praise, his lack of commercial success stems from his resistance to writing…

“Come on, girl, just use your four extra arms!” I often tease my friends like this when we’re trying to accomplish a tricky caregiving task together. Some things would go a lot smoother if we had more hands helping…

A technique to estimate the health of nerve cells that control movement may help predict how strongly some individuals will respond to the spinal muscular atrophy (SMA) gene therapy Zolgensma (onasemnogene abeparvovec-xioi), a study reports. This…

For adults with spinal muscular atrophy (SMA), a genetic disease that progressively weakens breathing muscles, the approved treatment Spinraza (nusinersen) offers a crucial long-term benefit — stable lung function over several years. Data from a multi-center…

Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day —…

When I was younger, the idea of me turning 30 felt like a distant dream for me and my family. Living with spinal muscular atrophy (SMA), I was constantly reminded by doctors, statistics, and even the quiet fears…

The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore,…