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
Accessibility ChallengesHave you faced accessibility challenges lately? Maybe when trying to go out and do something social? We want to hear your stories here. Share below....Reactions 0 reactions Comments0 repliesDisabilityTips & Advice
May is Mental Health Awareness Month!It's ok to not be ok. It's valid to feel all the highs and lows that life hands you, especially when living with a rare disease. How has your mental...Reactions 0 reactions Comments0 repliesMental Health
FeaturedDating with SMAWhen dating with SMA, what are some activities one can do other than going out to dinner? The diverse the list the better! Share below....Reactions 0 reactions Comments2 repliesIntimacy & RelationshipsTips & Advice
Self pleasure tipsHello. Please delete if this isn't appropriate, but I was just curious what y'all do to help yourself when you're in the mood?...Reactions 0 reactions Comments0 repliesIntimacy & Relationships
FeaturedCommon Myths & Misconceptions You've FacedWhat are some common myths & misconceptions you've faced living with SMA?...Reactions 0 reactions Comments0 repliesMyths & Misconceptions
Sma led dync1h1 mutation Hello, I have several dync1h1 mutations and i am looking for expert who can confirm if they are pathogenic (report says acmg likely pathogenic) Thanks...Reactions 0 reactions Comments1 replies
Some tips for using and purchasing assistive equipment are ___________.Fill in the blank! What is your experience with purchasing assistive equipment? Do you have any fears about using them? Are there certain wheelchairs or assistive tools that have helped...Reactions 0 reactions Comments4 repliesAssistive EquipmentTips & Advice
FeaturedTreatment Journey UpdateWhere are you on your treatment journey? Have you begun treatment or are you weighing your options? Do you have experience switching or stopping treatment? If you stopped, why did...Reactions 0 reactions Comments6 repliesTreatment
