Have you experienced thoughtless comments recently?One of our patient leaders, Mike, shared in a recent article that he's heard thoughtless comments from folks about being in wheelchair. These comments really strike him the wrong way...Reactions 0 reactions Comments0 repliesTips & AdviceStigma
Awareness Month 2023 If there was one thing you'd tell someone about SMA, what would it be? Do you wish there was more awareness around this rare condition? Or do you wish there...Reactions 0 reactions Comments1 replies
Tips on Speaking Up!How do you speak up for yourself? Do you rely on others to help you? Share some tips for others living with SMA on how they can speak up for...Reactions 0 reactions Comments1 repliesTips & Advice
Accessibility IssuesHave you run into recent accessibility issues lately? Maybe trying to get into a store that didn't have a ramp for your wheelchair? If so, how did you handle this?...Reactions 0 reactions Comments0 repliesDisabilityResources
Working with NonprofitsDo you have experience working with nonprofits? Have you been able to receive funding through them for assistive technology or something else? Begin the discussion below....Reactions 0 reactions Comments0 repliesAssistive EquipmentTips & Advice
Do you have experience wearing adaptive clothing?Have you maybe participated in an adaptive clothing fashion show? Do you have any favorite brands? Share them with our community!...Reactions 0 reactions Comments0 repliesTips & Advice
Do you know a solution for those health issues?Hey there, life with SMA has never been easy, but since 2 years I´m having severe problems and need your advice... It all started with my first Covid Vaccination (Astra...Reactions 0 reactions Comments2 repliesSymptomsMental HealthSleep
Daily RoutinesWhat is your daily routine? Have you found that a routine helps you manage your SMA? Share below....Reactions 0 reactions Comments0 repliesTips & Advice
Preventing Pressure Injuries for wheelchair boundHi SMA community, I am a caregiver for my 70yr old father diagnosed with SMA 3. He is currently receiving Spinraza. Our biggest challenge in keeping him healthy is preventing...Reactions 0 reactions Comments3 replies
Are You in an Interabled Relationship?What is your experience like being in an interabled relationship? If you need inspiration, read Suzanne's perspective: https://spinalmuscularatrophy.net/living/interabled-relationships Share below!...Reactions 0 reactions Comments0 repliesIntimacy & Relationships