Living

Buying a home is an exciting adventure. However, when you are dealing with a disability like spinal muscular atrophy, you know that you will need to make some renovations. If...

On December 23, 2016, I celebrated my birthday, marking a momentous occasion: the FDA had approved Spinraza as the inaugural treatment for spinal muscular atrophy (SMA). I recall lying in...

One of the most common questions I get asked regarding my frequent traveling is how I shower. Of course, this depends on our lodging situation, whether it be a hotel...

I am the youngest of my siblings at twenty nine years old. I have two step-brothers and one step-sister. Due to genetics, I am the only one in my family...

Hello all! Today I wanted to share my wheelchair stories and my tips for getting a new one! Since my family can't afford a van, (why are they so ridiculously...

As summer eventually becomes fall and winter, bringing with it an increased risk of illness, those of us living with spinal muscular atrophy (SMA) face unique challenges. While we often...

Around five years ago, I had a throbbing toothache. I had no idea what was wrong other than my face hurt and my tooth hurt. We had just moved to...

I feel like I've mentioned my advocacy here and there, and I'm sure we all know the reason behind why it's important; for us disabled people to have equal rights...

For families and people living with spinal muscular atrophy (SMA), health advocacy is a vital part of navigating the condition and improving lives. Advocating for SMA has a ripple effect...

Having a disability like spinal muscular atrophy is extremely challenging. Every day is a battle between my body and my mind. Frankly, it can be brutal inside. And with that brutality...

I’ve been driving a power wheelchair since the age of two. My wheelchair has been a part of my life and a second part of my body since then. It...

In middle school, I gained anxiety and was in pure denial, especially when it came to getting help, I was in that “fitting in” phase in middle school. SMA has...

As a 34-year-old individual living with spinal muscular atrophy (SMA), my journey through the healthcare system has been extensive and enlightening. Regular interactions with various specialists such as pulmonologists, cardiologists...

My friends Sawsan and James were in the Easterseals Disability Film Challenge. The film is called Out of Reach. In it, James talks about independence, “I thought I would be...

PLEASE NOTE: THIS GIVEAWAY HAS ENDED Living with spinal muscular atrophy (SMA) means an endless stream of adapting the world to you, and you to the world. We are celebrating...

Summer is finally here and I couldn’t be more excited for all the warm weather and thunderstorms to come. With summer here, I wanted to share some ways I spend...

Good old summertime! How do you manage the summer with your SMA? Do you embrace the hot summer weather or prefer to stay indoors in the air conditioning? And what...

In May, I was out to dinner with my girlfriend Suzanne and a few of my old colleagues. After dinner, Suzanne wanted to go to Homegoods to look at some...

Navigating life as a wheelchair user with spinal muscular atrophy has its unique set of challenges, and among those, something as seemingly simple as staying hydrated has been a personal...

If you live with SMA, then you know the ‘waiting for the other shoe to drop’ mentality. I lived there for a long time, and sometimes, I am honestly still...