Son With SMA BICD2 Gene Mutation...This week, his diagnosis of a very rare form of SMA has been confirmed through genome testing.... By CommunityMembera6ebe41 min readBookmark for laterReactions0reactionsComments1 comments
Diagnosis Discussion Board...Were doctors skeptical of another disease, or did they know it was SMA right away?...Reactions0reactionsComments0 replies
Food alternatives...I consulted my physician and he recommended I go with food alternatives like healthy shake from a company that starts with Herba and...Reactions0reactionsComments3 repliesDiet & Nutrition
Acts of Kindness...Have you experienced radical kindness or inclusivity recently? Let's share positive stories with our community!...Reactions0reactionsComments1 replies
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....Reactions0reactionsComments0 repliesTips & AdviceStigma
Active todaySupport Animals...Do you have a support animal? Tell us about it, and we'd LOVE to see a picture!...Reactions0reactionsComments0 repliesCoping
How do you find balance?...Do you find it difficult to balance the emotional and physical aspects of SMA? Share your advice with the community....Reactions0reactionsComments1 replies
FeaturedDating with SMA...What are some activities you like to do on dates other than going to restaurants? We want to hear from you!...Reactions0reactionsComments3 repliesIntimacy & RelationshipsTips & Advice
FeaturedI'd Like To Thank My Caregiver For _______________...What would you say to your caregiver? What is something you're most grateful for when it comes to your relationship with them?...Reactions0reactionsComments2 repliesHealthcare Team
What season do you prefer and why?...Which season, summer, fall, winter, or spring, is the easiest and most enjoyable to live with SMA? Why?...Reactions0reactionsComments2 repliesCoping
Diet and Nutrition ...Any advice would be great because I'm tired of feeling trapped....Reactions0reactionsComments2 replies
SMA & Technology...Do you have smart technology that you find yourself relying heavily on in your day to day life? Tell our SMA community...Reactions0reactionsComments1 repliesAssistive Equipment
Self Care Routine...What's that routine like? What kinds of things would you suggest to others seeking a self care routine?...Reactions0reactionsComments1 repliesTips & AdviceMental Health
Do you know a solution for those health issues?...life with SMA Type 1B)....Reactions0reactionsComments2 repliesSymptomsMental HealthSleep
Pros and Cons of Power Chairs...What are some things you love and some things you dislike about using a power chair?...Reactions0reactionsComments0 repliesAssistive Equipment
How to get up from ground after falling?...are partly portable but those costs upwards of USD 5K....Reactions0reactionsComments2 repliesAssistive EquipmentTips & AdviceTravel
Commode accessories...At the rented place where I stay in, I use something called "Toilet Seat Raiser" which I can fit over the toilet and increase the...Reactions0reactionsComments10 repliesAssistive EquipmentTravelTips & 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...Reactions0reactionsComments0 repliesMental Health
Adaptive Sports & Hobbies...What are some of your favorite adaptive sports or hobbies? How have you really made them something you love and enjoy? Share with Reactions0reactionsComments0 replies
Government Programs...What would you like to see? How about non-governmental resources?...Reactions0reactionsComments0 repliesDisabilityAwarenessCost