Living

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...

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...

As Mother’s Day approaches, I find myself reflecting on all the things my mom has done for me since I was diagnosed with spinal muscular atrophy (SMA). Caring for someone...

“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how to cook. At least fry some eggs. If...

I was born in the 1970s and, while genetic counseling started in 1969, it wasn’t what it is today. There was no known history of any kind of muscular dystrophy...

The beauty of sharing our stories lies not just in the telling, but also in the impact they can have on others. My recent journey to a different state for...