My Process For A New WheelchairHello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't...reactionscomments
On Being Told To Live Independently“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how...reactions1comment
Raising Awareness About Early Diagnosis and Immediate TreatmentAs someone living with spinal muscular atrophy (SMA), I know firsthand the challenges and triumphs that come with this condition. That's why...reactions1comment
Why Are You in a Wheelchair?This is the question that every person with SMA will be asked more times than anything else in their life. Parents who...reactionscomments
If I Knew Then What I Know NowWhen I was around 10, I was going through a lot of drama with my personal nurses. So now, I want to...reactions4comments
The Number One Beach Accessory You Might Not Know AboutThe beach for me as someone with spinal muscular atrophy can be a difficult place. I often feel most disabled in this environment...reactionscomments
Debunking Myths About Living With a Rare DiseaseSince spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to...reactionscomments
SMA Awareness Month 2022August is Spinal Muscular Atrophy (SMA) Awareness Month! Receiving a diagnosis for spinal muscular atrophy can be a long, frustrating process, leading...reactionscomments
A Sense of BelongingI can't remember if I've mentioned this before but for most of my life, I hid my SMA as much as possible...reactionscomments
Curious About How Others Manage SMA? Share Your Experience in Our PollsNavigating life with Spinal Muscular Atrophy (SMA) encompasses a myriad of challenges and triumphs, particularly concerning treatment experiences, personal relationships, and quality...reactionscomments
Embracing The ChallengesI had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience...reactions1comment
Making Medical Care More Accessible: 5 Simple Steps to Get It RightIf you’ve ever felt frustrated during a doctor’s visit, you’re not alone. For many of us with disabilities, those visits can sometimes...reactions1comment
Navigating Life Decisions with SMAA few weeks ago, I went in for my routine pulmonary checkup. These appointments happen every six to twelve months because of...reactions4comments
Changing My BiPap MachineFrom childhood onward, change has been a constant challenge for me. Every time I needed a new wheelchair or medical device, anxiety...reactionscomments
Best Experience EverI was thrilled to be nominated as one of the finalists for the Women of the Future Award - Asia. The experience...reactionscomments
Holiday Season BluesThe holiday season, with its festive lights and warm gatherings, often evokes a bittersweet feeling within me. Maybe it's because my birthday...reactions3comments
My Spark is Music, Not SMAThis year's theme for SMA Month was SMA does not define us. For Allie Williams, a patient leader for SpinalMuscularAtrophy.net, her life...reactions1comment
Sports and Recreation: Finding the Right FitDifferent types of SMA come with different physical abilities. Some people have a mild form of the illness and can walk. Others...reactionscomments
Mental Health with SMA – A Cellphone AnalogyThe best way I can describe living with a chronic disease like SMA is that I am a cellphone and my disease...reactions3comments
Challenges with SMA TreatmentsWe asked our team of advocates: What challenges have you faced around SMA treatment options?Allie: Due to how the approval of the...reactionscomments
