Living

Having a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly, it can be brutal inside. And with that brutality...

I’ve been driving a power wheelchair since the age of two. My wheelchair has been a part of my life and a second part of my body since then. It...

In middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that “fitting in” phase in middle school. SMA has...

As a 34-year-old individual living with spinal muscular atrophy (SMA), my journey through the healthcare system has been extensive and enlightening. Regular interactions with various specialists such as pulmonologists, cardiologists...

My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James talks about independence, “I thought I would be...

PLEASE NOTE: THIS GIVEAWAY HAS ENDED Living with spinal muscular atrophy (SMA) means an endless stream of adapting the world to you, and you to the world. We are celebrating...

Summer is finally here and I couldn’t be more excited for all the warm weather and thunderstorms to come. With summer here, I wanted to share some ways I spend...

Good old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to stay indoors in the air conditioning? And what...

In May, I was out to dinner with my girlfriend Suzanne and a few of my old colleagues. After dinner, Suzanne wanted to go to Homegoods to look at some...

Navigating life as a wheelchair user with spinal muscular atrophy has its unique set of challenges, and among those, something as seemingly simple as staying hydrated has been a personal...

If you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a long time, and sometimes, I am honestly still...

Hi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision to get on it, but aren't sure what's...

When I was younger, I had a 90-degree curve in my spine due to scoliosis from spinal muscular atrophy (SMA). My torso hunched, and the curve was visible. Doctors always...

Spinal muscular atrophy (SMA) is a genetic disorder where muscles become weak and waste away. Our goal at SpinalMuscularAtrophy.net is to connect people living with SMA and their caregivers with ...

From an early age, individuals with disabilities face a unique set of financial challenges. For me, these challenges began at 16, a time when most teenagers are taking their first...

After almost 2 years of searching and being outbid, my dream of becoming a homeowner has come to fruition. I would imagine the majority of the able bodied population enjoys...

Hello everyone! Hope all is well! Today, I wanted to talk about a fun and interesting accessible seating option. So my family and I love the band Daughtry, and we...

I can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible when I was younger. When we’re young, we...

Living with spinal muscular atrophy (SMA) brings its own set of challenges. Some challenges are glaringly obvious. Others play out behind the scenes. Growing up, I didn’t really care much...

I was about 4 years old when my parents became concerned about my physical well-being. My younger brother was becoming stronger than me, and this alerted my parents that something...