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
“I Have Chosen To Live With It Rather Than Just Survive”...Hello My name is Rafael Garcia, and I want to share with you a little bit about myself. I am a 27-year-old...reactions3comments
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...reactionscomments
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
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
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
Welcome to SpinalMuscularAtrophy.net Stories...At SpinalMuscularAtrophy.net, we believe that we are stronger together than we are alone. Living with spinal muscular atrophy can be a challenge...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...reactionscomments
Using Your Disability to Impact Lives...The beauty of sharing our stories lies not just in the telling, but also in the impact they can have on others...reactions1comment
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...reactionscomments
Spinal Muscular Atrophy Research...Understanding of spinal muscular atrophy (SMA) has come a long way, especially in the past few decades. Researchers in the 1990s found...
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
My Ewok Companion...In the vast and colorful world of dog adoption, there are countless tales of furry companions who found their forever homes. These...reactions1comment
How Alexa Became One of My Disability Must-Haves...I was talking to my Public Partnerships consultant a few weeks ago (PP is a program where I live where someone you...reactions2comments
Struggling to Find the Right Fit...It can be frustrating shopping for clothes that fit my body comfortably, especially dress clothes. I am at an age now where...reactions1comment
Emerging Drugs...People with spinal muscular atrophy (SMA) have mutated SMN1 genes. This leads to low levels of the “survival of motor neuron” (SMN)...
Spinal Fusion Surgery for Spinal Muscular Atrophy...Progressive back muscle weakness often leads to scoliosis (curvature of the spine) in people with spinal muscular atrophy (SMA). Scoliosis is very...
Complementary and Alternative Medicine...Treatment of spinal muscular atrophy (SMA) should focus on therapies with proven clinical benefit. This includes disease-modifying treatments that have been approved...
Disease-Modifying Drugs for Spinal Muscular Atrophy...As of 2024, the United States Food and Drug Administration (FDA) has approved 3 drugs to treat spinal muscular atrophy (SMA). They...
