How do you advocate for spinal muscular atrophy/disability rights...Please tell us what issues you advocate for and how....reactionsreplies
Hug Me Not My Wheelchair Please...I’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 Anxiety...In 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 Atrophy...As a 34-year-old individual living with spinal muscular atrophy (SMA), my journey through the healthcare system has been extensive and enlightening. Regular...reactionscomments
Have you ever attended an abilities exposition? ...If so, did you buy or find any useful products? Do you have anything else to share about the expo?...reactionsrepliesResources
Abilities Expo...I have been using my new powered wheelchair for about a year. When I am sitting for long periods of time, I...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
Making a home accessible...What home improvement would you do to make your home more accessible?...reactions3repliesDisability
How To Spend a Summer With SMA...Summer 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 SMA...Good old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
Advice for Your Younger Self...In various aspects of life, such as your health journey, relationships, or other personal matters, we often realize that hindsight is 20/20...reactions3repliesTips & Advice
Lack of Accessible Ubers...In May, I was out to dinner with my girlfriend Suzanne and a few of my old colleagues. After dinner, Suzanne wanted...reactionscomments
What season do you prefer and why?...Which season, summer, fall, winter, or spring, is the easiest and most enjoyable to live with SMA? Why?...reactions3repliesCoping
Hydration Hacks For a Wheelchair User...Navigating life as a wheelchair user with spinal muscular atrophy has its unique set of challenges, and among those, something as seemingly...reactions1comment
Thriving With SMA...If 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 Evrysdi...Hi 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 Surgery...When 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 Community...From an early age, individuals with disabilities face a unique set of financial challenges. For me, these challenges began at 16, a...reactionscomments
Buying My First Home...After almost 2 years of searching and being outbid, my dream of becoming a homeowner has come to fruition. I would imagine...reactionscomments
