Accessibility Etiquette...We asked our Health Leaders who live with spinal muscular atrophy: "What needs to make it into an 'accessibility etiquette' guide? What...reactionscomments
Life Expectancy and Prognosis for SMA...The life expectancy and prognosis of spinal muscular atrophy (SMA) vary widely between types. People with the most severe types may only...
Getting Back In the Pool After Surgery With SMA...Having spinal muscular atrophy (SMA) means relying on a powered wheelchair for mobility. While my wheelchairs and assistive gear offer a sense...reactionscomments
Art and SMA...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...reactions1comment
Embracing Freedom: Swimming with SMA...As someone with spinal muscular atrophy, swimming has always held a special place in my heart. Ever since I was a child...reactionscomments
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 Health...Social 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 Head...I know that I am not alone in this feeling. We ‘SMAers’ are very observant wallflowers. Meaning that we see everything. For...reactions2comments
Succeeding as a Disabled College Student...When it came time to start looking at colleges, there were two major items on my list that had to be checked:...reactionscomments
Finding Disabled Joy...So many of my friends who are disabled have spoken about the magic of being in a room full of people who...reactionscomments
Getting Tips and Support at the 2023 Cure SMA Conference...Last year was the first in-person Cure SMA conference post-pandemic, and unfortunately, I couldn't go due to health issues. I was absolutely...reactionscomments
Losing My Best Friend...Today my household had to do something that owners of pets dread. We had to make the decision to end our dog’s pain...reactions1comment
Symptoms of Spinal Muscular Atrophy...The most common symptoms of spinal muscular atrophy (SMA) are muscle weakness and low muscle tone. Recognizing these and other symptoms early...
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...reactions5comments
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
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...reactions1comment
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...reactions3comments
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...reactions1comment
What Is Mental Health?...Mental health is the range of thoughts, emotions, and behaviors that affect your well-being and how you relate to others. Just like...
Loss in the SMA Community...My SMA community was struck hard this winter season by a string of deaths. Blow by blow it broke me. My friend...reactions1comment
