More than moral support: A power wheelchair user’s race victory
Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot…
Columns
Guest Voice: Tempering expectations and keeping hope alive
For much of the time, the reality for those of us living with a chronic condition like SMA entails having something dangled in front of our faces, just out of reach — which isn’t challenging to do, considering…
Specially designed back brace helps ease scoliosis in SMA children
Using a specially designed back brace in addition to taking part in physical therapy may work best to reduce abnormal spine curvature, or scoliosis, in children with spinal muscular atrophy (SMA) type 1, a…
A magazine article was my family’s lifeline during my SMA diagnosis
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness.
My experience can teach others about home health nursing
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…
PROTAC therapy shows promise for SBMA, study finds
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…
SMA creators can talk about more than living with a disability
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…
Supermom friends as caregivers, and their surprising superpowers
“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…
Metric may predict response to SMA gene therapy Zolgensma
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…
Spinraza can protect adults with SMA from breathing decline
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…