Living

We'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...

It 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...

Every 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...

Sometimes 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...

The 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...

My 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...

As 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...

When 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...

Living 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. ...

Financial 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...

My 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...

Growing 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...

Home 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...

Life 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...

What 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...

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 devastated, so to finally be able to go...

The other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids running around and a spouse working. I simply...

This is how true crime podcasts start:  As someone who travels with my power wheelchair and who cannot transfer easily for trips, I always plan far in advance for wheelchair...

I often struggle with low energy, year-round, but especially in the winter. I'd like to share some things that have helped me and hopefully will help you. I get low...

Living with a chronic condition like spinal muscular atrophy (SMA) can have significant social and emotional impacts on individuals and their families. The challenges presented by SMA, particularly in its...