Symptoms of Spinal Muscular Atrophy...The most common symptoms of spinal muscular atrophy (SMA) are muscle weakness and low muscle tone. Recognizing these and other symptoms early...
The Gift of Self-Advocacy: Teaching Kids To Use Their Voice...Growing up with spinal muscular atrophy (SMA), I've had the privilege of witnessing the remarkable impact of my parents' guidance in teaching...reactions5comments
What Would You Invent?...Plato said, “Necessity is the mother of invention.” We asked our Health Leaders, who live with spinal muscular atrophy, "What accessibility-related invention...reactionscomments
I Was a Guinea Pig...In the 1990s, I found myself unwittingly becoming a pioneer in the quest for advancements in SMA care. As a person living...reactions1comment
Valentine's Day and SMA...The holidays always bring their own set of challenges, and Valentine’s Day is no different for me. Throughout my life, I've never...reactions3comments
Worst Case Scenario: a Cold...*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood* As of writing this, I was sick this...reactions1comment
Loss in the SMA Community...My SMA community was struck hard this winter season by a string of deaths. Blow by blow it broke me. My friend...reactions1comment
Learning, Growing, Healing, Trying...Sometimes I can't help but hold myself to an able-bodied standard. By this I mean, I can't help but think it's bad...reactionscomments
Dealing With Grief During Festive Seasons...Every year when we come to the festive season (for us in Malaysia it's Hari Raya Aidilfitri), it is the hardest time...reactions1comment
Getting Christmas Sorted with SMA...As a 31-year-old with SMA, Christmas is always pretty exciting. Ever since I was little, I’ve adored the sparkle of December. But...reactions1comment
Healthy Holiday Boundaries...We all just survived a pandemic. That is no small feat! As the holidays come around, we are going to be surrounded...reactionscomments
Myths and Misconceptions About Spinal Muscular Atrophy...Like many rare diseases, there are many misconceptions about spinal muscular atrophy (SMA). Most people are not familiar with SMA until a...
Your Story Matters...All of us have a unique story to share with the world. And whether it’s by writing a book, starting a blog...reactionscomments
What A Small Cold Can Do...In October, my mom caught a little cold during a trip to her doctor's office. She suffered a sore throat, cough, runny...reactionscomments
My Battle With Chronic Pain and SMA...In my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the...reactions1comment
Jake Saxton...Jake Saxton is a 20-year-old college student studying human resource management at Temple University. He was diagnosed with spinal muscular atrophy type...
Friends That Travel Together, Stay Together...People say travel friendships can last a lifetime. With traveling, it shows how solid your friendships are because you will know how...reactionscomments
Adding Fun to Tiring Doctors Appointments...In general, I believe that all of us would like to be and stay healthy as much as possible. With spinal muscular...reactions2comments
Thoughtful Christmas Gifts for Wheelchair Users...I cannot believe it’s already that time of year. I’m getting the question, “What do you want for Christmas!?” I have found myself...reactionscomments
Awarded an MBE for Disability Advocacy...If I were to say 2023 has been a wild ride, it would be a huge understatement - and there are still...reactions1comment
