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
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
How to Maintain Privacy with Around-the-Clock Care at HomeThe other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids...reactionscomments
Caring For A Loved OneBeing paid to take care of someone is a thought that never crossed my mind. Growing up in a large family and...reactionscomments
Looking forward to WinterDecember is officially upon us! At the end of the year, I reflect upon it. Usually, my seasonal depression really affects me...reactionscomments
My Favorite Accessible GiftsI know that, overall, finding gifts can be tough, especially finding things for someone who is disabled and has specific needs, like...reactionscomments
Braving Surgery: My Journey with SMA and Kidney StonesLiving with spinal muscular atrophy (SMA) Type 2 brings a unique set of challenges into my everyday life, but nothing has tested...reactionscomments
