Living

Living with spinal muscular atrophy (SMA) feels like riding a rollercoaster of emotions, but having my lifeline, also known as my personal care assistant (PCA), adds some much-needed comedy and...

Being born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled people. As a child, we experience this from...

Having spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense of freedom, nothing beats the sheer delight of...

12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to paint these? I make art for a living...

I feel as though having a disability is a constant balancing act of freedom and cost. Owning an accessible van can be a ticket to freedom for many with mobility...

Maintaining a reliable vehicle is vital for individuals living with spinal muscular atrophy (SMA) to maintain their independence and overall well-being. Unfortunately, vehicle repairs can often be a financial burden...

Social media can be a game changing tool for anyone, especially people in the SMA and disabled communities. I've chatted about this before – it allows homebound individuals to make...

I know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For me, this has helped me to survive when...

In the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These stories often involve the rescue of dogs from...

Life has its moments – some challenging, some joyful. As a full-time electric wheelchair user with limited arm mobility due to spinal muscular atrophy, I've experienced my fair share of...

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...