Articles

I have gastroparesis, along with spinal muscular atrophy. I was diagnosed with it last year after almost a lifetime of stomach and GI issues. With the diagnosis came orders of...

We asked our patient leaders about how they celebrate the holidays: Are there any special accommodations they and their family/friends have adopted to make special occasions easier? What is the...

It’s 2023, a new year and new beginnings. We asked our patient leaders to tell us about their hope for the new year for themselves and others living with spinal...

The US government has many laws that protect and support rights for disabled persons. People with spinal muscular atrophy (SMA) have certain rights under these laws.1,2 The Americans with Disabilities...

I'll be honest here- I didn't grow up around anyone with a disability. Growing up, classrooms in my school were segregated. I didn't know anyone who was disabled personally until...

Self-care is one of those things we all know we should take care of, but neglect during stressful times. When managing daily chores, work, school, family, and friends gets to...

The time of year is upon us when the temps are dropping, the holidays are approaching and the terrifying “F” word is among us. I know that most parents do...

I’m sure we all can remember that Labor Day meant watching the Jerry Lewis’s Muscular Dystrophy Telethon.  It was always an emotional experience for me.  My senior year of high...

Conditions like spinal muscular atrophy may prevent you from working, as well as be expensive to treat. Getting approved for disability benefits from the US Social Security Administration (SSA) can...

Life consists of transitions both large and small. One could argue that transitions are good and bad. I would argue that life would be extremely boring if we never had...

Like our other Health Union condition communities, the Social Health Network brings people together to drive unique and impactful conversations about health. It also aims to expand opportunities for health...

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...

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...