My Ewok Companion...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...Reactions0reactionsComments1 comments
Support Animal...Do you have a support animal/pet? What do you love about them? Would you recommend a support animal for other SMA patients?...Reactions0reactionsComments1 repliesTips & Advice
The Joy of Finding My Four-Legged Support...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...Reactions0reactionsComments1 comments
Grieving Over a Spoon and Fork...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...Reactions0reactionsComments1 comments
"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 wanted to write about my experience as an...Reactions0reactionsComments0 comments
Self Advocacy...Do you consider yourself an advocate for yourself? If so, how did you start advocating? How has it impacted your life with SMA?...Reactions0reactionsComments0 repliesTips & Advice
The Importance of Wearing Your Seatbelt with SMA...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...Reactions0reactionsComments0 comments
The Gift of Self-Advocacy: Teaching Kids To Use Their Voice...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...Reactions0reactionsComments1 comments
If I Knew Then What I Know Now...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...Reactions0reactionsComments4 comments
Diffusing Awkwardness With Humor...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...Reactions0reactionsComments0 comments
Making Friends as an Adult with SMA...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...Reactions0reactionsComments0 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...Reactions0reactionsComments0 comments
SMA & Technology...Do you have smart technology that you find yourself relying heavily on in your day to day life? Tell our SMA community all about it!...Reactions0reactionsComments1 repliesAssistive Equipment
How Alexa Became One of My Disability Must-Haves...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...Reactions0reactionsComments2 comments
I Was a Guinea Pig...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...Reactions0reactionsComments1 comments
Becoming Me...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...Reactions0reactionsComments0 comments
Valentine's Day and SMA...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...Reactions0reactionsComments3 comments
Teaching Your Kids About Disabilities...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...Reactions0reactionsComments0 comments
Independence & SMA...What would complete and total independence look like for you? How would you describe it? Do you have small every day wins that help you feel independent? Join the conversation....Reactions0reactionsComments2 repliesTips & Advice
Rocking the Solo Life...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...Reactions0reactionsComments1 comments