Asking For Help With SMA: Grocery Shopping...Living with spinal muscular atrophy (SMA) Type 2 means navigating a world where asking for help is a constant necessity. My body simply cannot do everything I want it to...reactions1comment
Debunking Myths About Living With a Rare Disease...Since spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to share my experiences and stories for good is...reactionscomments
Curious About How Others Manage SMA? Share Your Experience in Our Polls...Navigating life with Spinal Muscular Atrophy (SMA) encompasses a myriad of challenges and triumphs, particularly concerning treatment experiences, personal relationships, and quality of life. Understanding these facets is crucial for...reactionscomments
Embracing The Challenges...I had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience. The shooting took place in an entirely different...reactions1comment
Have you encountered challenges with your SMA treatment?...Whether it be side effects, financial, insurance denials, or complications, please share with us. We'd love to hear a bit about your treatment journey....reactions4repliesTreatmentTips & Advice
Making Medical Care More Accessible: 5 Simple Steps to Get It Right...If you’ve ever felt frustrated during a doctor’s visit, you’re not alone. For many of us with disabilities, those visits can sometimes feel more like obstacles to overcome than opportunities...reactions1comment
Navigating Life Decisions with SMA...A few weeks ago, I went in for my routine pulmonary checkup. These appointments happen every six to twelve months because of my spinal muscular atrophy type 2 (SMA) and...reactions4comments
Community Question: What would you buy?...If you found $100 on the sidewalk and wanted to help yourself manage your SMA, what would you buy?...reactionsrepliesResources
Anxious When I Am Alone...I was having a panic attack about being alone. As of writing this, I got a facial yesterday. My parents decided to hang out by the pool in the spa...reactions3comments
Losing Weight With SMA...When people think about losing weight, they often envision crafting an exercise routine tailored to their body's needs—a regimen that promises to target and tone problem areas. They hit the...reactionscomments
Best Experience Ever...I was thrilled to be nominated as one of the finalists for the Women of the Future Award - Asia. The experience itself was nothing short of extraordinary and gave...reactionscomments
Holiday Season Blues...The holiday season, with its festive lights and warm gatherings, often evokes a bittersweet feeling within me. Maybe it's because my birthday coincides with this season, serving as a reminder...reactions3comments
Venting about dating sites...I have used them off and on for years now. I really hate how they are set up. Most of them prioritize photos to an extent that sometimes people have...reactions3repliesDisabilityIntimacy & RelationshipsStigma
SMA Friendly Christmas Gift Guide...As the holiday season rolls around, it’s time to find thoughtful gifts everyone will love. If you’re shopping for a teen or adult with spinal muscular atrophy (SMA), finding the...reactions4comments
Overcoming Obstacles...What has been the biggest obstacle that you have overcome with SMA? What was your greatest challenge and how did you get through it? Health Leader Samantha Przybylski writes: The...reactionscomments
Back Swimming...Recently my son, his brother and I went back to hydrotherapy after 1 and half years. It was an amazing experience. We are hoping to do it every weekend....reactions2replies
Overcoming Obstacles From Painting To The Field...Navigating the challenges associated with neurodegenerative conditions has always been an arduous journey, filled with ups and downs. Living with spinal muscular atrophy (SMA) feels akin to managing a full-time...reactions1comment
FeaturedWould you be willing to share your SMA caregiving story?...We'd love to hear from you! Are you interested in connecting with us to interview about your SMA caregiving experience? If so, please email us at contact@spinalmuscularatrophy.net. You’re also welcome...reactionsrepliesCaregiving
Useful Things For Someone With SMA...With spinal muscular atrophy, you know the easier something is, the better off you are. When you struggle to do the silliest task, having items or tools there to help...reactionscomments
What makes a great present for you?...🎁 What would you like to receive as a disabled person? What would make your life easier? 🎁...reactions1replyAssistive Equipment
