Making a home accessible...What home improvement would you do to make your home more accessible?...reactions3repliesDisability
Enter the Giveaway: Adapting Your World...PLEASE NOTE: THIS GIVEAWAY HAS ENDED Living with spinal muscular atrophy (SMA) means an endless stream of adapting the world to you, and you to the world. We are celebrating...reactionscomments
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, I wanted to share some ways I spend...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 stay indoors in the air conditioning? And what...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. If given the chance, what is the one...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 to go to Homegoods to look at some...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 simple as staying hydrated has been a personal...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 long time, and sometimes, I am honestly still...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 to get on it, but aren't sure what's...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 hunched, and the curve was visible. Doctors always...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 people living with SMA and their caregivers with ...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 time when most teenagers are taking their first...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 the majority of the able bodied population enjoys...reactionscomments
Unique Accessible Seating During a Fun Weekend Trip...Hello everyone! Hope all is well! Today, I wanted to talk about a fun and interesting accessible seating option. So my family and I love the band Daughtry, and we...reactionscomments
Warm Weather Essentials...Summer is here! What things do you keep with you on a day to day basis to ensure that you can tolerate the heat? Any accessibility tools that are your...reactions2repliesTips & Advice
A Sense of Belonging...I can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible when I was younger. When we’re young, we...reactionscomments
Getting Comfortable In My Style...Living with spinal muscular atrophy (SMA) brings its own set of challenges. Some challenges are glaringly obvious. Others play out behind the scenes. Growing up, I didn’t really care much...reactionscomments
Taking Care of a Child With SMA...By its very nature, caregiving can take an emotional and physical toll on your health. If your child has spinal muscular atrophy (SMA), you may feel added stress and worry...reactionscomments
Can Someone Really Predict Life Expectancy?...I was about 4 years old when my parents became concerned about my physical well-being. My younger brother was becoming stronger than me, and this alerted my parents that something...reactionscomments