Tips for Talking to Your Doctor About SMAMost people living with spinal muscular atrophy (SMA) need care from multiple doctors. Regular doctor’s visits help you or your child manage...reactionscomments
Navigating Medical Procedures With SMAIf you live with spinal muscular atrophy (SMA) of any type, then you know how difficult it can be to have medical...reactionscomments
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...reactionscomments
The Game Changer-BiPAPI remember this day well. The start of an unbelievable journey. Who would have thought I needed to wear a BiPAP? It...reactionscomments
School Safety Drills as a Student with SMADuring my school years, active participation in safety drills, including fire and tornado drills, was mandated. For the average able-bodied child, these...reactionscomments
"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
Navigating Large Crowds In A WheelChair: My First Concert ExperienceI have anxiety about being surrounded by large groups or crowds of people. But when Taylor Swift announced her 1989 World Tour...reactions2comments
Nighttime Tips and TricksBased on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips...reactionscomments
My Evrysdi Journey So FarOn December 23, 2016, I celebrated my birthday, marking a momentous occasion: the FDA had approved Spinraza as the inaugural treatment for...reactionscomments
First Home RenovationBuying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that...reactionscomments
How Do I Connect With Other People in the SMA Community?Spinal muscular atrophy (SMA) is a genetic disorder where muscles become weak and waste away. Our goal at SpinalMuscularAtrophy.net is to connect...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
Traveling Shower HacksOne of the most common questions I get asked regarding my frequent traveling is how I shower. Of course, this depends on...reactionscomments
Balancing Life When You Are IllLife with SMA has two halves - the mobility half, and the illness half. Managing the mobility issues and illness of spinal...reactions2comments
What Does Independence Look Like?My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James...reactionscomments
New Year - New Me?I never liked the phrase "new year, new me." It made me feel like everything I did last year was thrown away...reactionscomments
Honest Look at a Parent’s HeartbreakThe emotions that each parent truly lives with from that first day our child is given a diagnosis of a neuromuscular disease...reactionscomments
CourageSometimes I find my confidence and insecurity going hand in hand. I know this might sound strange, but it's true. I don't...reactionscomments
Why Advocacy Is Important to the SMA CommunityFor families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving...reactionscomments
Having Able-Bodied Siblings As Someone With SMAI am the youngest of my siblings at twenty nine years old. I have two step-brothers and one step-sister. Due to genetics...reactions2comments
