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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 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... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments1 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?...Reactions 0 reactions Comments0 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... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 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... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 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... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments4 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... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments0 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... 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
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!...Reactions 0 reactions Comments1 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... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments2 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... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 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... By Kellie Cusack3 min readBookmark for laterReactions 0 reactions Comments0 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... By Jennifer Greer2 min readBookmark for laterReactions 0 reactions Comments3 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... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments0 comments
Active 7 days agoIndependence & 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....Reactions 0 reactions Comments2 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... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Worst Case Scenario: a Cold...*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... By Kellie Cusack4 min readBookmark for laterReactions 0 reactions Comments1 comments
Tips for Cold/Flu Season...Getting sick is no fun! What're some tips and tricks you have to survive cold and flu season?...Reactions 0 reactions Comments4 repliesTips & Advice
Will you take our In America survey and help others understand the true impact of SMA?...The In America survey is now closed. To better understand the patient experience and realities of SMA, we are fielding our SMA In America survey. By taking this anonymous survey...Reactions 0 reactions Comments0 repliesAwareness