Living

Who would've known that a seemingly simple pair of utensils could carry such emotional weight? The other night, my sister invited us over to her house for dinner. This wasn't...

On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I wanted to write about my experience as an...

In my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my teeth. Annoying? Undoubtedly. A safety measure? Absolutely. As...

Growing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching me to be my own advocate. This journey...

When I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to put a positive (but also realistic) spin on...

When living with spinal muscular atrophy, there are moments when you're getting some help dressing or with personal care, and something hilariously awkward happens. For instance, that time when my...

Back in elementary school, the worry about making friends lingered—I feared judgment based on my wheelchair and back brace. My hope was always that my peers would see me just...

Plato said, “Necessity is the mother of invention.” We asked our Health Leaders, who live with spinal muscular atrophy, "What accessibility-related invention would you like to see, that would make...

I was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you love can get paid to help take care...

In the 1990s, I found myself unwittingly becoming a pioneer in the quest for advancements in SMA care. As a person living with spinal muscular atrophy (SMA), the landscape of...

Although we are only a few months into the year, as I write this, I've learned so much. About a week ago, I decided to get rid of, by unsubscribing...

The holidays always bring their own set of challenges, and Valentine’s Day is no different for me. Throughout my life, I've never dated anyone, but I still hold onto the...

From a very young age, I've been intimately familiar with the world of disabilities. Diagnosed with SMA type 2 at just 18 months, I entered the public school setting as...

Well, folks! It's been a wild ride – a decade of liberation from marriage and an interesting tango with spinal muscular atrophy (SMA). Who needs a partner when you can...

*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this past Thursday and then finally felt better today...

In October, my mom caught a little cold during a trip to her doctor's office. She suffered a sore throat, cough, runny nose, and a mild migraine for about four...

In my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the growing-up process with SMA, something we all had...

Many people with disabilities, like spinal muscular atrophy, may struggle with self-care necessities, especially bathing/showering when access is hard. My situation was no different, and I want to describe the...

It can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where I am getting out of always wearing sweatpants...

Last year, to make a long story short, I had a bunch of GI issues. The GI team decided to give me a peg tube. I want to be friends...