Articles

My late wife Zelda was pregnant in 1974! This was our first pregnancy! Zelda was under the care of her obstetrician.  She visited her doctor for all appointments. Everything was normal...

“Come visit this awesome new restaurant,” my friends begged me. “It’s got great Yelp reviews and we’ve wanted to visit it.” “This club has the best drinks and the friendly...

One of the great things about little kids is that they have no filter. For example, when adults see someone with a physical disability, they usually politely avert their eyes...

Since late 2019, COVID-19 has become a household name. It has changed many aspects of daily life. Especially for those living with chronic conditions. "Quarantine," "social distancing," and "herd immunity"...

I want to talk about the extra expenses for anyone who deals with a physical disability. Dealing with the physical aspects of spinal muscular atrophy sometimes feels like a small...

As you move along in your life’s journey, the memory of life-altering events comes back in detail. We remember that wedding day and the birth of each of our children...

Living with a disability, I like to consider a full-contact sport. It requires your mind, body, and soul to be as healthy as possible. And in most cases, it requires...

Do ducks swim in their own pee? Are babies even real? Or just pretend? When I’m an adult, I will walk. This was all within 5 minutes of pulling into...

Everyone in the SMA community knows that August is our month... well, everyone except for me. I’m ashamed to admit I did not know about SMA Awareness/Pride month until this...

We all want to fit in. What does that look like? Who do we want to be? I believe that everyone deals with this feeling of being left out at...

Spinal muscular atrophy (SMA) is a lifelong condition. SMA is most commonly diagnosed at birth or during early childhood. The symptoms of SMA depend on which type a person has...

It all started here Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few...

“Steve Stoma is the worst roommate.” Yes, I named my g-tube and that’s what I tell all doctors and people who have no idea what I’m talking about or referring...

Talking to an employer about spinal muscular atrophy (SMA) can be scary. But many people find that open communication with their employer improves their work life. For example, your employer...

I am the parent of a wonderful son who lives with SMA. What I’ve learned is that when you have a loved one diagnosed with a disease, it affects the...

A child’s diagnosis of spinal muscular atrophy (SMA) can be a life-changing event for parents. Parents say they feel a range of emotions while waiting for a diagnosis and after...

Clinical trials have a language of their own. It helps to understand the common terms used when describing a clinical trial before you sign up. Here are some of the...

Clinical trials are medical studies that pose a question: Does a new treatment work better than older treatments? Each year, thousands of treatments are tested in controlled experiments called clinical...

A clinical trial is a type of research. Research is the process scientists use to explain how our bodies work or why our bodies stop working well. Clinical trials are...