Living

I wrote an article a while back, “Staying Mentally Healthy.” In that article, I attributed a lot of my mental toughness to my circumstances. Most importantly growing up in a...

Jessie and her brother were born twins. It is important to realize that she was diagnosed with spinal muscular atrophy (SMA) at six months of age. My son did not...

After getting news that your child has a serious illness like spinal muscular atrophy (SMA), you will likely turn to family and friends for support. Here are some things to...

We quickly needed a village of professionals. Our daughter, Jessie, was born with spinal muscular atrophy (SMA) back in 1974. We quickly realized that we needed to plan for a...

Many illnesses, such as spinal muscular atrophy, come with steep price tags. Once you have a diagnosis, navigating treatment expenses can be challenging. Insurance plans cover some expenses. But out-of-pocket...

I’ve talked about the “disability tax” in previous articles. You’ll hear people who have a physical disability use this term. It basically refers to the extra expenses that are incurred...

The United States government has many laws that protect rights to education for children with disabilities. Spinal muscular atrophy (SMA) is considered an orthopedic impairment under these laws. This means...

In 1974, my wife and myself were frightened when the Pediatric Neurologist diagnosed my daughter, Jessie, with spinal muscular atrophy (SMA) when she was less than a year old. During...

The festive side of the year is around the corner, and that always gets me excited! A key part of living with spinal muscular atrophy (SMA) for me has always...

Have you ever had a desire to cook an amazing meal for someone but had a thought, “how would I do that? With my spinal muscular atrophy, I can’t lift...

Everyone has to deal with barriers. When we think of spinal muscular atrophy we probably assume these barriers are physical. I want to talk about the barriers we put on...

Voting is a fundamental American right, but it has special meaning for people with disabilities, like spinal muscular atrophy, or health conditions. Until federal laws like the Americans with Disabilities...

I recently watched a new movie based on a true story about a young man who unexpectedly became a quadriplegic due to an accident. Even though I have spinal muscular...

Symptoms of spinal muscular atrophy (SMA) can make it hard to use technology. Computer assistive devices and strategies can improve access. They can help people with SMA communicate, maintain independence...

If you’ve lived with spinal muscular atrophy for any length of time you expect to have weakness progress in your body. However, one area I was never prepped for weakening...

Note: This year's theme for SMA Month was SMA does not define us. For Chaz Hayden, a patient leader for SpinalMuscularAtrophy.net, his life as a writer is one way he...

Spinal muscular atrophy (SMA) is a rare genetic condition that causes muscle weakness. People with SMA may have problems with doing daily activities, movement, and speech.1 Having an accessible home...

This year's theme for SMA Month was SMA does not define us. For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life as an artist is one way she defines...

This year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life as a musician is one way she defines...

Recently I went on a search to find an accessible hobby that didn’t include technology or staring at a screen. I didn’t have much luck since technology is a key...