Articles

Many people with spinal muscular atrophy hire a personal care assistant to provide a wide range of tasks, from personal care, meal preparation and feeding, to transportation and more. For...

Traveling has always been a passion of mine. When I was younger I was fortunate enough to travel to Costa Rica, Guatemala, Mexico, Cuba, Brazil, India, Vietnam, Malaysia, China, Japan...

It is 1974, and my wife was pregnant. We were not expecting twins However, we were blessed with twins. One of the twins, my daughter, Jessie was born with Spinal...

We asked our patient leaders: What housing tips do you have for someone with spinal muscular atrophy (SMA)? Have you taken steps to make your house more accessible? If so...

Recently I felt like I was stuck in a rut with my hobbies or activities to unwind. It seemed like I was either on my computer or watching TV. And...

I have lived a life of always confirming my own personal safety.  Once I had a child, the awareness grew exponentially. My first experience of personal awareness started in my...

This topic recently came up while talking with other writers from this page. I am very outgoing and have always loved being out doing things. Well, that hasn’t always been...

In March 2020 I became Mike’s full-time caregiver.  This was a big decision and one we discussed for a long time. It was the beginning of the pandemic and Mike’s...

My biggest advice for traveling with SMA through airfare is to communicate, communicate, communicate. OVER-communicate. At least for me, I hate feeling like a burden and like I need to...

Some mornings you wake up and you just know the day is going to be tough. You want to stay in bed, in the warm comfort of your home, and...

As I’ve gotten older and my disease, spinal muscular atrophy, has progressed a little more, eating out started to become more of a daunting task. However, it’s really important to...

Summertime is an interesting part of the year for people with disabilities, especially children. Warm weather seems great, but really it leads people to inaccessible places like the beach, going...

My parents never hid anything from me. I knew exactly what SMA meant. I knew the realities of my future even as a young child. I even remember hearing the...

So many of my friends who are disabled have spoken about the magic of being in a room full of people who are just like you. Having SMA, and working...

Previously I wrote about preparing for surgery and the considerations surrounding anesthesia and intubation. But when you have SMA there’s unfortunately so much more to think about and pack when...

Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards...

Making friends was never difficult for me as a young girl or even as a teenager. I have always been a pretty outgoing person. I was always extremely sociable, loved...

My daughter, who had spinal muscular atrophy, was mainstreamed in a regular classroom throughout her school years. We lived in a semi-affluent area. All her classmates were able-bodied. Her fellow...

Recently I shared how my journey with Evrysdi stopped after taking the medication for over a year. This was for a few reasons, the primary being insurance battles and their...

I have been house shopping. There is a better chance of winning the lottery than finding the perfect home that is 100% accessible to meet my needs. The trick is...