First Grade-How My Advocacy StartedI have spinal muscular atrophy (SMA), a condition that affects my muscles and mobility. But the amazing part is that I went to a regular school for first grade way... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments0 comments
Awarded an MBE for Disability AdvocacyIf I were to say 2023 has been a wild ride, it would be a huge understatement - and there are still several weeks left! I live in the UK... By Michaela Hollywood3 min readBookmark for laterReactions 0 reactions Comments1 comments
Radical InclusivityDefinition of Inclusion: 1. The action or state of including or of being included within a group or structure. 2. The practice or policy of providing equal access to opportunities... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments0 comments
Cold Weather Tool Kit EssentialsThe anticipation of the winter season brings joy and excitement to many as it heralds the arrival of holidays and gatherings with loved ones. However, for those of us living... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments5 comments
Parking Lot Mishaps: The Wheelchair EditionWe've all witnessed that mom clutching her child's hand like it's a lifeline as they navigate a chaotic parking lot. This could be an accident waiting to happen for anyone... By Megan DeJarnett2 min readBookmark for laterReactions 0 reactions Comments1 comments
Six Months With My First Power ChairIt has been six months since I started using my first power wheelchair. Over the last 28 years, I used an electric scooter to get around. The biggest reason for... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
Dealing With Grief During Festive SeasonsEvery year when we come to the festive season (for us in Malaysia it's Hari Raya Aidilfitri), it is the hardest time for me. Not just for me, but also... By Ainaa Farhanah3 min readBookmark for laterReactions 0 reactions Comments1 comments
Learning, Growing, Healing, TryingSometimes I can't help but hold myself to an able-bodied standard. By this I mean, I can't help but think it's bad to rest and will trigger my depression if... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Traveling For The Holidays With SMAThe holiday season is around the corner, and many of us are gearing up for travel to visit friends and family. I know I am! I’m currently counting down the days... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments0 comments
Competing In Sports With SMAMy SMA story begins at the age of two. Up until that time, I was meeting all my physical milestones until one day, my twin sister, Rachel, began walking up... By Jake Saxton3 min readBookmark for laterReactions 0 reactions Comments3 comments
Raising Awareness About Early Diagnosis and Immediate TreatmentAs someone living with spinal muscular atrophy (SMA), I know firsthand the challenges and triumphs that come with this condition. That's why I'm writing to emphasize the importance of early... By Allie Williams2 min readBookmark for laterReactions 0 reactions Comments1 comments
Power of the ChairWhen people see another person in a wheelchair, a subtle transformation occurs, and they do their best to act with kindness. Often strangers extend their hands to hold open doors... By Suzanne Cutler2 min readBookmark for laterReactions 0 reactions Comments1 comments
Helping Others Helps MeLiving with a disability like spinal muscular atrophy can be difficult at times. My 46 years of experience have taught me some life lessons about what is important to me. ... By Mike Noon2 min readBookmark for laterReactions 0 reactions Comments0 comments
The Benefits of Opening an ABLE AccountFinancial planning can be a daunting task for anyone, but for individuals with disabilities, such as spinal muscular atrophy, and their families, it comes with an added layer of complexity... By Megan DeJarnett3 min readBookmark for laterReactions 0 reactions Comments0 comments
Top Things To Do in NYC That Are AccessibleMy mom and I love to travel, and as we live close to the city, New York City, I wanted to share some of my favorite things to do and... By Kellie Cusack2 min readBookmark for laterReactions 0 reactions Comments0 comments
Embracing Independence: My Journey with IncontinenceGrowing up with spinal muscular atrophy (SMA) and relying on a wheelchair, my daily life was an intricate dance of navigating the challenges that most people never even consider. One... By Jennifer Greer4 min readBookmark for laterReactions 0 reactions Comments1 comments
Just Let Me Return ThisHome delivery of groceries and online shopping became a normal occurrence for many people during the COVID-19 pandemic. As someone with mobility issues because of my spinal muscular atrophy, my... By Allie Williams3 min readBookmark for laterReactions 0 reactions Comments1 comments
Balancing Life When You Are IllLife with SMA has two halves - the mobility half, and the illness half. Managing the mobility issues and illness of spinal muscular atrophy is something we all focus on... By Michaela Hollywood3 min readBookmark for laterReactions 0 reactions Comments2 comments
Talking to Others About SMAWhat are your tips for talking to your family and friends about SMA? What are your tips for talking to your coworkers or casual friends about SMA? Mike: This is... By SpinalMuscularAtrophy.net Team2 min readBookmark for laterReactions 0 reactions Comments1 comments
Getting Tips and Support at the 2023 Cure SMA ConferenceLast year was the first in-person Cure SMA conference post-pandemic, and unfortunately, I couldn't go due to health issues. I was absolutely devastated, so to finally be able to go... By Kellie Cusack4 min readBookmark for laterReactions 0 reactions Comments0 comments