Getting Tips and Support at the 2023 Cure SMA Conference...Last year was the first in-person Cure SMA conference post-pandemic, and unfortunately, I couldn't go due to health issues. I was absolutely...reactionscomments
Commode accessories...Since I have sma I cannot sit down and get up on any chair that is lower than 24 inches. I have...reactions11repliesAssistive EquipmentTravelTips & Advice
How to Maintain Privacy with Around-the-Clock Care at Home...The other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids...reactionscomments
This is How True Crime Podcasts Start...This is how true crime podcasts start: As someone who travels with my power wheelchair and who cannot transfer easily for trips...reactionscomments
How do you manage your energy with SMA?...What tips do you have that have helped you manage and conserve your energy while living with SMA?...reactions4repliesTips & Advice
Managing Energy...I often struggle with low energy, year-round. I'd like to share some things that have helped me and hopefully will help you...reactions6comments
Awareness Month 2023 Spotlight: Your SMA Story ...What brings you to our community? Do you identify has a caregiver, patient, or health care provider? Use this forum space to...reactionsrepliesAwareness
Can I be ...I was hurt on the job in 2018 I was hit in the head by a 250lb beem and after 6 surgerys...reactions2repliesDepression
Challenges of SMA and Its Progression...Living with a chronic condition like spinal muscular atrophy (SMA) can have significant social and emotional impacts on individuals and their families...reactions1comment
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...reactions7repliesComplicationsSurgerySymptoms
Accessibility Etiquette...We asked our Health Leaders who live with spinal muscular atrophy: "What needs to make it into an 'accessibility etiquette' guide? What...reactionscomments
Loss Support Thread ...Have you lost a loved one to spinal muscular atrophy? This is a safe space for you....reactionsreplies
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...reactions3comments
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...reactionscomments
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...reactions1comment
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...reactionsrepliesTips & 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...reactionscomments
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...reactions1reply
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...reactionsrepliesDisabilityResources
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?...reactionsrepliesAssistive EquipmentTips & Advice
