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
Becoming Okay With My AnxietyIn middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that...reactionscomments
The Advocacy Issues That Matter To MeI feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important;...reactionscomments
Personal GrowthBeing born with a genetic disorder like spinal muscular atrophy forces us to adapt to a world that wasn’t built for disabled...reactions2comments
Fears Of Flu and FeversAs summer eventually becomes fall and winter, bringing with it an increased risk of illness, those of us living with spinal muscular...reactionscomments
Health Literacy and SMAFor people with spinal muscular atrophy (SMA), health literacy is crucial. SMA is a genetic disorder that affects muscle strength and movement...reactionscomments
Discrimination SituationAround five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and...reactionscomments
Unique Accessible Seating During a Fun Weekend TripHello everyone! Hope all is well! Today, I wanted to talk about a fun and interesting accessible seating option. So my family...reactionscomments
