Traveling Shower Hacks...One of the most common questions I get asked regarding my frequent traveling is how I shower. Of course, this depends on our lodging situation, whether it be a hotel...reactionscomments
Having Able-Bodied Siblings As Someone With SMA...I am the youngest of my siblings at twenty nine years old. I have two step-brothers and one step-sister. Due to genetics, I am the only one in my family...reactions2comments
Support Animals...Do you have a support animal? Tell us about it, and we'd LOVE to see a picture!...reactionsrepliesCoping
Learning the Hard Way: Ensuring Safety for Students with Disabilities...When I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She knew all about me, my specific needs, and...reactionscomments
My Process For A New Wheelchair...Hello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't afford a van, (why are they so ridiculously...reactionscomments
Fears Of Flu and Fevers...As summer eventually becomes fall and winter, bringing with it an increased risk of illness, those of us living with spinal muscular atrophy (SMA) face unique challenges. While we often...reactionscomments
Health Literacy and SMA...For people with spinal muscular atrophy (SMA), health literacy is crucial. SMA is a genetic disorder that affects muscle strength and movement. Here is why health literacy matters, the impacts...reactionscomments
Discrimination Situation...Around five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and my tooth hurt. We had just moved to...reactionscomments
The Advocacy Issues That Matter To Me...I feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights...reactionscomments
Why Advocacy Is Important to the SMA Community...For families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving lives. Advocating for SMA has a ripple effect...reactionscomments
FeaturedWhat type of advocacy are you currently involved in or hoping to be?...We would love to hear and learn more about your advocacy efforts or goals. - Fundraising - Policy change - Research support - Community outreach - Other How did you...reactions5repliesAwareness
Poliomyelitis ...My spine and neurological system was attacked by poliomyelitis at the age of 2 and 1/2 which left me paralyzed from the waist down. So for 63 years I've lived...reactions1reply
Things That Make Me Angry About SMA...Having a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly, it can be brutal inside. And with that brutality...reactionscomments
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 second part of my body since then. It...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 “fitting in” phase in middle school. SMA has...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 interactions with various specialists such as pulmonologists, cardiologists...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 can become uncomfortable. I reached out to my...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 talks about independence, “I thought I would be...reactionscomments