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...Reactions0reactionsComments1 comments
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....Reactions0reactionsComments0 repliesTreatmentTips & 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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments4 comments
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?...Reactions0reactionsComments0 repliesResources
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...Reactions0reactionsComments3 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments3 comments
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...Reactions0reactionsComments3 repliesDisabilityIntimacy & 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...Reactions0reactionsComments4 comments
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...Reactions0reactionsComments0 comments
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....Reactions0reactionsComments2 replies
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 repliesCaregiving
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...Reactions0reactionsComments0 comments
What makes a great present for you?...🎁 What would you like to receive as a disabled person? What would make your life easier? 🎁...Reactions0reactionsComments1 repliesAssistive Equipment
Perks of Living With SMA...Some might think living with spinal muscular atrophy (SMA) is all bad. That life is full of doom and gloom, but I am here to let you know it’s not...Reactions0reactionsComments4 comments
Learning From a Fall: Safety Tips for Wheelchair Users...The other day, I fell out of my wheelchair. It’s not the first time this has happened, but it was definitely the most memorable. I’ll admit, when I was younger...Reactions0reactionsComments0 comments
Braving Surgery: My Journey with SMA and Kidney Stones...Living with spinal muscular atrophy (SMA) Type 2 brings a unique set of challenges into my everyday life, but nothing has tested me quite like my current battle with kidney...Reactions0reactionsComments0 comments
