Learning the Hard Way: Ensuring Safety for Students with DisabilitiesWhen I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She...reactionscomments
My Process For A New WheelchairHello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't...reactionscomments
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
Discrimination SituationAround five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and...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
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
Things That Make Me Angry About SMAHaving a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly...reactionscomments
Hug Me Not My Wheelchair PleaseI’ve been driving a power wheelchair since the age of two. My wheelchair has been a part of my life and a...reactionscomments
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
Navigating Kidney Health with Spinal Muscular AtrophyAs a 34-year-old individual living with spinal muscular atrophy (SMA), my journey through the healthcare system has been extensive and enlightening. Regular...reactionscomments
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
How To Spend a Summer With SMASummer is finally here and I couldn’t be more excited for all the warm weather and thunderstorms to come. With summer here...reactionscomments
Summertime With SMAGood old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
Lack of Accessible UbersIn May, I was out to dinner with my girlfriend Suzanne and a few of my old colleagues. After dinner, Suzanne wanted...reactionscomments
Hydration Hacks For a Wheelchair UserNavigating life as a wheelchair user with spinal muscular atrophy has its unique set of challenges, and among those, something as seemingly...reactions1comment
Thriving With SMAIf you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a...reactionscomments
My Journey With EvrysdiHi friends! Today I wanted to write about my journey with Evrysdi. If you or a loved one are making the decision...reactionscomments
Remembering My Spinal Fusion SurgeryWhen I was younger, I had a 90-degree curve in my spine due to scoliosis from spinal muscular atrophy (SMA). My torso...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
Forced Poverty in the Disability CommunityFrom an early age, individuals with disabilities face a unique set of financial challenges. For me, these challenges began at 16, a...reactionscomments
