Holidays with SMA...We'd love to hear about how you celebrate the holidays! Share with us below....Reactions0reactionsComments1 replies
Some tips for using and purchasing assistive equipment are ___________....Imagine that you're talking to a recently diagnosed patient or the parent of a recently diagnosed child. Start the conversation below!...Reactions0reactionsComments4 repliesAssistive EquipmentTips & Advice
Tips on Speaking Up!...Share some tips for others living with SMA on how they can speak up for themselves, even if finding the voice and words Reactions0reactionsComments1 repliesTips & Advice
Have you ever attended an abilities exposition?...If so, did you buy or find any useful products? Do you have anything else to share about the expo?...Reactions0reactionsComments0 repliesResources
Is this SMA?...Besides having severe multilevel spinal stenosis, my MRI says There is a left paraspinal muscular atrophy....Reactions0reactionsComments2 repliesAwareness
FeaturedStaying Positive with SMA ...Do you have a special way to keep positive despite the challenges of SMA? What works for you? Join the conversation below....Reactions0reactionsComments3 repliesMental HealthCoping
Switching from Spinraza to Risdiplam...I'd hate to start then have to switch back and redo loading doses of Spinraza again. Has anyone here made the switch to oral?...Reactions0reactionsComments1 replies
How do you advocate for spinal muscular atrophy/disability rights...Please tell us what issues you advocate for and how....Reactions0reactionsComments0 replies
Managing Depression...I want to understand how personal with SMA cope with mental depression when you lose the ability to do certain things which Reactions0reactionsComments27 repliesCopingDepression
Accessible Housing Tips...Have you made changes to make your house more accessible for someone with spinal muscular atrophy? If so, what changes have you made?...Reactions0reactionsComments0 repliesTips & AdviceAssistive Equipment
Accessibility Issues...If so, how did you handle this?...Reactions0reactionsComments0 repliesDisabilityResources
Mental Health Month...May is Mental Health Month. Do you feel that spinal muscular atrophy has an affect on your mental health?...Reactions0reactionsComments0 repliesCopingMental HealthTips & Advice
Self pleasure tips...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?...Reactions0reactionsComments0 repliesIntimacy & Relationships
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...Reactions0reactionsComments1 replies
Making a home accessible...What home improvement would you do to make your home more accessible?...Reactions0reactionsComments2 repliesDisability
ABLE Savings Accounts...Do you know what an ABLE account is? Do you have experiencing opening one/contributing to one for your own...Reactions0reactionsComments0 repliesTips & Advice
Welcomed Support for Caregivers...What kind of support do you find useful as the caregiver of someone with SMA? Who gives you that support and how Reactions0reactionsComments0 repliesCaregivingFriends & Family
Mental Health Awareness Month: Guilt...Do you ever feel guilt about someone having to take care of you or being your caregiver? Tell us more about your experiences...Reactions0reactionsComments1 repliesMental Health
Resources ...What resources are you aware of that could help people with spinal muscular atrophy? Websites? Organizations? Books? Feel free to share here!...Reactions0reactionsComments0 repliesResources
Vacations & Travel with SMA...A community member recently asked to learn more about how to air travel with SMA. Have you done lots of traveling before as...Reactions0reactionsComments8 replies