The Gift of Self-Advocacy: Teaching Kids To Use Their VoiceGrowing 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 PigIn 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 SMAThe 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 CommunityMy 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, TryingSometimes 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 SeasonsEvery 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 SMAAs 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 BoundariesWe all just survived a pandemic. That is no small feat! As the holidays come around, we are going to be surrounded...reactionscomments
Your Story MattersAll 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 DoIn 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 SMAIn my life, aches and pains have been constant companions. In my younger years, I chalked them up as part of the...reactions1comment
Friends That Travel Together, Stay TogetherPeople 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 AppointmentsIn 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 UsersI 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 AdvocacyIf I were to say 2023 has been a wild ride, it would be a huge understatement - and there are still...reactions1comment
Radical InclusivityDefinition of Inclusion: 1. The action or state of including or of being included within a group or structure. 2. The practice...reactions1comment
What is Your Definition of Independence?Living with a disability can make us stubborn in our ways. I know for me it’s the inability to control what my...reactionscomments
5 Tips for Dating with a DisabilityThe dating landscape with social media and dating apps is not always an ideal way to meet others when you have a...reactions2comments
