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, and at the age of 18 I had...Reactions0reactionsComments7 repliesComplicationsSurgerySymptoms
Accessibility Etiquette...We asked our Health Leaders who live with spinal muscular atrophy: "What needs to make it into an 'accessibility etiquette' guide? What drives you crazy about the way people interact...Reactions0reactionsComments0 comments
Loss Support Thread ...Have you lost a loved one to spinal muscular atrophy? This is a safe space for you....Reactions0reactionsComments0 replies
My Beautiful Granddaughter...Our granddaughter was born but misdiagnosed with type 1 SMA by the hospital and also the health care visitors. This was overlooked by all hospital professionals until she was 4...Reactions0reactionsComments2 comments
Embracing Freedom: Swimming with SMA...As someone with spinal muscular atrophy, swimming has always held a special place in my heart. Ever since I was a child, being in an electric wheelchair, I was immensely...Reactions0reactionsComments0 comments
Loss in the SMA Community...My SMA community was struck hard this winter season by a string of deaths. Blow by blow it broke me. My friend Kim was the worst blow by far. I...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 repliesTips & AdviceStigma
Managing Thoughtless Comments...If you use a wheelchair or scooter like me, because of spinal muscular atrophy, I am sure you have heard all of the comments. Wow, that looks fun. Wanna race? ...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 replies
Accessibility Issues...Have 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?...Reactions0reactionsComments0 repliesDisabilityResources
Working with Nonprofits...Do 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....Reactions0reactionsComments0 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!...Reactions0reactionsComments4 repliesTips & Advice
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...Reactions0reactionsComments1 repliesTips & Advice
Feeling Emotional About Things People Say...I gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with, “Nothing. She just sits at home. Doing nothing.”...Reactions0reactionsComments1 comments
Accessible Getaway Tips...We asked our Health Leaders for some summertime advice: Do you have a summer vacation or getaway planned? What makes for the best, most refreshing, and most accessible vacation? Here's...Reactions0reactionsComments0 comments
Courage...Sometimes I find my confidence and insecurity going hand in hand. I know this might sound strange, but it's true. I don't want to speak for all of us, but...Reactions0reactionsComments0 comments
Challenges of Being Your Partner's Full-time Caregiver...Caring for a loved one with a disability like spinal muscular atrophy can be both a rewarding and challenging experience. One of the primary challenges of being a full-time caregiver...Reactions0reactionsComments1 comments
Wheelchair Accessible Seating Hacks...Who has dealt with the frustration of securing wheelchair-accessible seats? It can be a pain in the neck sometimes. Over the years I’ve gone to hundreds of sporting events and...Reactions0reactionsComments3 comments
ABLE Accounts...Living on disability income often means living at or below the poverty line. Qualifying for assistance requires having limited resources. That reality is changing with ABLE accounts. ABLE Accounts are...
Adaptive Fashion and the Double Take Fashion Show...Hello everyone! Today, since it's officially June as I write this, and the warm weather is here, (my favorite season!) I wanted to talk about adaptive fashion and how this...Reactions0reactionsComments0 comments
