Personal GrowthBeing 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... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 of freedom, nothing beats the sheer delight of... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 paint these? I make art for a living... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 a ticket to freedom for many with mobility... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
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, vehicle repairs can often be a financial burden... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
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 before – it allows homebound individuals to make... By Jennifer Greer2 min readBookmark for laterReactions 0 reactions Comments4 comments
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 me, this has helped me to survive when... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments2 comments
My Ewok CompanionIn 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... By Allie Williams4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 muscular atrophy, I've experienced my fair share of... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
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 over to her house for dinner. This wasn't... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 teeth. Annoying? Undoubtedly. A safety measure? Absolutely. As... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
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 me to be my own advocate. This journey... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 put a positive (but also realistic) spin on... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments4 comments
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 awkward happens. For instance, that time when my... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 always that my peers would see me just... By Jennifer Greer3 min readBookmark for laterReactions 0 reactions Comments0 comments
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 would you like to see, that would make... By SpinalMuscularAtrophy.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
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 love can get paid to help take care... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments2 comments
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 with spinal muscular atrophy (SMA), the landscape of... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Valentine's Day and SMAThe 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... By Jennifer Greer2 min readBookmark for laterReactions 0 reactions Comments1 comments
Teaching Your Kids About DisabilitiesFrom 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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments