Personal GrowthBeing born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled...reactions2comments
Getting Back In the Pool After Surgery With SMAHaving spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense...reactionscomments
Art and SMA12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to...reactions1comment
Pros and Cons of Owning an Accessible VanI feel as though having a disability is a constant balancing act of freedom and cost. Owning an accessible van can be...reactions10comments
Why Are Car Repairs So Expensive?Maintaining a reliable vehicle is vital for individuals living with spinal muscular atrophy (SMA) to maintain their independence and overall well-being. Unfortunately...reactions1comment
Social Media and Mental HealthSocial media can be a game changing tool for anyone, especially people in the SMA and disabled communities. I've chatted about this...reactions4comments
Getting Out Of My HeadI know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For...reactions2comments
My Ewok CompanionIn the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These...reactions1comment
The Joy of Finding My Four-Legged SupportLife has its moments – some challenging, some joyful. As a full-time electric wheelchair user with limited arm mobility due to spinal...reactions1comment
Grieving Over a Spoon and ForkWho would've known that a seemingly simple pair of utensils could carry such emotional weight? The other night, my sister invited us...reactions1comment
"Most Likely Not To…" The Musical!On February 29th, 2024, The Times Center officially hosted the first-ever SMA musical in collaboration with SMA My Way and Genentech! I...reactionscomments
The Importance of Wearing Your Seatbelt with SMAIn my younger days, donning my belt each morning was a steadfast ritual. It was something I did everyday, like brushing my...reactionscomments
The Gift of Self-Advocacy: Teaching Kids To Use Their VoiceGrowing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching...reactions5comments
If I Knew Then What I Know NowWhen I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
Diffusing Awkwardness With HumorWhen living with spinal muscular atrophy, there are moments when you're getting some help dressing or with personal care, and something hilariously...reactionscomments
Making Friends as an Adult with SMABack in elementary school, the worry about making friends lingered—I feared judgment based on my wheelchair and back brace. My hope was...reactionscomments
What Would You Invent?Plato said, “Necessity is the mother of invention.” We asked our Health Leaders, who live with spinal muscular atrophy, "What accessibility-related invention...reactionscomments
How Alexa Became One of My Disability Must-HavesI was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you...reactions2comments
I Was a Guinea PigIn the 1990s, I found myself unwittingly becoming a pioneer in the quest for advancements in SMA care. As a person living...reactions1comment
Becoming MeAlthough we are only a few months into the year, as I write this, I've learned so much. About a week ago...reactionscomments
