Just a couple of years ago, I knew little to nothing about cystic fibrosis (CF), a genetic disease that affects approximately 30,000 people in the United States alone. My perspective is wildly different now that I have friends and co-workers with CF. I’ve learned…
My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond to dozens of messages on a typical workday. This is not normally a problem, but for some reason, I…
Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college student with SMA type 2. Some of my faithful readers may recall…
Recently, I attended the 2019 Cure SMA Chapter and Leadership Conference in Boston. There, I connected with friends I had met through previous conferences and listened to presentations from Cure SMA staff members, as well as updates from the pharmaceutical companies…
It’s my favorite time of year. I love the fresh autumn breeze that brushes past my face every time I go outside and the fact that it’s socially acceptable to run around in Freddy Krueger and Darth Vader masks. I’m…
The auditorium filled up quickly for a Monday night. Everyone was bursting with excitement. I sat in the back with my friend Jacob and posted on Facebook that I was about to freak out like a teenage fangirl at a Jonas Brothers concert. Yes, ladies, I’m…
Fun fact: I’m a huge sucker for the coming-of-age genre. I voraciously consume memoirs like “If at Birth You Don’t Succeed“ and religiously quote shows like “Boy Meets World.” I once wrote a paper…
My summer was a roller coaster of ups and downs. Amid all of my adventures and celebratory occasions, I also dealt with loss and my fair share of chaos. That’s life with SMA in a nutshell. June began with a rush of excitement. I took a…
In 2017, writer Keah Brown created the hashtag #DisabledAndCute. To Brown’s astonishment, this phrase sparked a viral social media movement. As the hashtag flooded her Twitter and Instagram feeds, Brown saw countless individuals with disabilities embrace a message…
A few weeks ago, someone posted a question in a Facebook group for people living with neuromuscular conditions. The question, composed of a few simple words, prompted me to stop and think. How’s your life going right now? A question like this should be…
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