Author Archives: Connie Chandler

It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to…

As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased,…

How can I possibly show the deep appreciation that I have for the caregivers in my life with spinal muscular atrophy (SMA)? This is a question that burdens me often when I feel…

I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say…

My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our…

For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim…

“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea…

This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season.

When you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as…

I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my…