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...reactionsrepliesCaregiving
FeaturedWhat type of advocacy are you currently involved in or hoping to be?We would love to hear and learn more about your advocacy efforts or goals. - Fundraising - Policy change - Research support...reactions5repliesAwareness
Welcome to the spinal muscular atrophy community!Welcome to our community! Please introduce yourself and tell us what has brought you here....reactions2replies
My Chart & other electronic communicationsHow do you feel about communicating with your doctor with MyChart or similar computer-based platforms? Does it make things easier on you...reactionsreplies
How do you find balance?When you're ill for a long time and can't stick to the things you love doing, how do you manage your mental...reactions5replies
Severe neck weakness I'm 39 years old and live in Portugal. Was diagnosed with SMA type2 in London (Hammersmith Hospital) around my early teenager years...reactions7repliesComplicationsSurgerySymptoms
FeaturedDoctors won’t address my smaSo, I was reading my mri report and it says I have mild to moderate paraspinal musculature atrophy. You can clearly see...reactions3repliesHealthcare TeamSymptomsTesting
Switching from Spinraza to RisdiplamHi, Apologies if this has been discussed.. new to forum. I have 2 children with SMA 3, age 13 and 11. They...reactions4replies
Advice for First Time Living Independently/Managing PCAsHello! I am a college student and will be living independently with just PCAs soon for the first time. I am very...reactions1replyCaregivingEducation & Schooling Insurance
You are more than someone with SMA. Who are you?SMA is an all-consuming condition and affects so much of our lives. Other than SMA, how do you describe yourself? What is...reactions9repliesAwareness
Is this SMA?Besides having severe multilevel spinal stenosis, my MRI says There is a left paraspinal muscular atrophy. Multilevel degenerative changes with multilevel disc...reactions3repliesAwareness
Diet and Nutrition Hello everyone, I need advice. I'm really struggling to figure out food. I don't see any recipes I like online that are...reactions3replies