Articles

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...

By its very nature, caregiving can take an emotional and physical toll on your health. If your child has spinal muscular atrophy (SMA), you may feel added stress and worry...

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...

Guess what I did? I took a trip to Washington, D.C., to advocate for a cure for spinal muscular atrophy (SMA) on Capital Hill. It was an incredible journey, but...

As a wheelchair user, I've navigated many paths—-some smooth, some fraught with obstacles. Yet, one of the most transformative journeys I've embarked on is not one that required physical navigation...

By definition, abuse is something that inflicts pain or emotional distress on a vulnerable person through verbal or nonverbal acts. Abuse thrives in shame and silence. It is based on...

For me, personally, the smallest things are the scariest. I know that you just have to do it, as they say, but I guess the not knowing is the worst...

May is Mental Health Month, sponsored by the Mental Health Association, and it is a perfect time to pause, consider how we can improve our mental health, and support each...

We asked a couple of our young Health Leaders, Kellie and Jennifer, about the transition from their teenage years to adulthood, how they are coping with responsibility for their own...