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
Summertime With SMAGood old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to...reactionscomments
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
Interabled Relationships are Just Like Any Other RelationshipLove knows no boundaries, and when it comes to interabled relationships, it is no different. Mike and I are in an interabled...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
Anxious When I Am AloneI was having a panic attack about being alone. As of writing this, I got a facial yesterday. My parents decided to...reactions7comments
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
Overcoming Obstacles From Painting To The FieldNavigating the challenges associated with neurodegenerative conditions has always been an arduous journey, filled with ups and downs. Living with spinal muscular...reactions1comment
