Articles

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...

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...

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...

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...

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? ...

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.”...

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...

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...

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...