I don’t remember when or why my general interest in working with children gravitated toward those with special needs. Before returning to school for teacher certification in special education, I spent a year substituting in self-contained schools and classes throughout the massive Fort Worth, Texas, school system. My father was…

Children with spinal muscular atrophy (SMA) have higher rates of emotional and behavioral challenges than children in the general population, even with today’s modern treatments, a new study reports. “In our treated SMA cohort, mental health challenges occurred across a variety of severities of motor function and created an…

Last in a series. Read part one.  Last week, I wrote about my wheelchair and how, even though I get frustrated or embarrassed by it sometimes, I’m thankful that it gives me comfort, support, mobility, independence, and opportunities to raise awareness. Another thing I often complain about is…

In her anthology “Disability Visibility: First-Person Stories from the Twenty-first Century,” the late activist and writer Alice Wong offers profound insight into the power of storytelling. She says in one of her essays, “Storytelling can be more than a blog post, essay, or book. It can be an…

Before the end of this year, thanks to a new decision by the U.S. Food and Drug Administration (FDA), one-time gene therapy will be available to people of all ages with spinal muscular atrophy (SMA) in the United States. The first SMA gene therapy, Zolgensma (onasemnogene abeparvovec-xioi), was…