Nighttime Tips and TricksBased on my friend Allie’s article about her morning routine, I thought I'd offer my nighttime routine. Here are some nightly tips and tricks that really help me. I would...Reactions0reactionsComments0 comments
First Home RenovationBuying 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...Reactions0reactionsComments0 comments
My Evrysdi Journey So FarOn 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...Reactions0reactionsComments0 comments
Traveling Shower HacksOne 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...Reactions0reactionsComments0 comments
Having Able-Bodied Siblings As Someone With SMAI 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...Reactions0reactionsComments2 comments
Learning the Hard Way: Ensuring Safety for Students with DisabilitiesWhen I was in school, I had a personal aide who accompanied me every day and followed me through several grades. She knew all about me, my specific needs, and...Reactions0reactionsComments0 comments
My Process For A New WheelchairHello 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...Reactions0reactionsComments0 comments
Fears Of Flu and FeversAs 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...Reactions0reactionsComments0 comments
Discrimination SituationAround 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...Reactions0reactionsComments0 comments
The Advocacy Issues That Matter To MeI 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...Reactions0reactionsComments0 comments
Why Advocacy Is Important to the SMA CommunityFor 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...Reactions0reactionsComments0 comments
Things That Make Me Angry About SMAHaving 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...Reactions0reactionsComments0 comments
Hug Me Not My Wheelchair PleaseI’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...Reactions0reactionsComments0 comments
Becoming Okay With My AnxietyIn 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...Reactions0reactionsComments0 comments
Navigating Kidney Health with Spinal Muscular AtrophyAs 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...Reactions0reactionsComments0 comments
What Does Independence Look Like?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...Reactions0reactionsComments0 comments
Enter the Giveaway: Adapting Your WorldPLEASE 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...Reactions0reactionsComments0 comments
How To Spend a Summer With SMASummer 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...Reactions0reactionsComments0 comments
Summertime With SMAGood 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...Reactions0reactionsComments0 comments
Lack of Accessible UbersIn 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...Reactions0reactionsComments0 comments