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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 repliesAwareness
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...Reactions0reactionsComments0 replies
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...Reactions0reactionsComments0 comments
How do you advocate for spinal muscular atrophy/disability rights...Please tell us what issues you advocate for and how....Reactions0reactionsComments0 replies
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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?...Reactions0reactionsComments0 repliesResources
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
Making a home accessible...What home improvement would you do to make your home more accessible?...Reactions0reactionsComments2 repliesDisability
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments