Articles

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...

Since I was a little girl I dreamt of the day that I would “walk” down the aisle on my big day. I didn’t think about the logistics as a...

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...

In our first ever Spinal Muscular Atrophy In America Survey, we collected information from 54 adults living with SMA and 8 caregivers about their experiences of living with this rare...

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...

I realized that we, as parents of a child with spinal muscular atrophy (SMA), were trying to do everything possible to meet her needs. There were many choices in life...

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...

My experience with anticipatory grief (AG) began when Jessie was about 3 months old. She was not meeting her developmental goals compared to her twin brother. Our pediatrician advised us...

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...

Advocacy is part of my daily life. I provide family support to newly diagnosed families, I share Emma’s story as a patient ambassador for the treatment she receives, I work...

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...

I have talked about this a few times already. I have also read other parents' points of view on this site.  I can say with certainty that we all come...