The Game Changer-BiPAP...I remember this day well. The start of an unbelievable journey. Who would have thought I needed to wear a BiPAP? It...reactionscomments
School Safety Drills as a Student with SMA...During my school years, active participation in safety drills, including fire and tornado drills, was mandated. For the average able-bodied child, these...reactionscomments
What has been the biggest obstacle you have overcome with SMA?...What was your greatest challenge, and how did you get through it?...reactions1replyCopingAwareness
Navigating Large Crowds In A WheelChair: My First Concert Experience...I have anxiety about being surrounded by large groups or crowds of people. But when Taylor Swift announced her 1989 World Tour...reactionscomments
Nighttime Tips and Tricks...Based on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips...reactionscomments
First Home Renovation...Buying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that...reactionscomments
My Evrysdi Journey So Far...On December 23, 2016, I celebrated my birthday, marking a momentous occasion: the FDA had approved Spinraza as the inaugural treatment for...reactionscomments
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...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...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...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...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...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...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...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;...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...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...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...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...reactionscomments
