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The first time I broke the system, I was thrilled. It was a high I’d never experienced before — I felt that I had been cunning and sneaky. I wanted more of this feeling. I found a new goal in life: to always reach for the impossible.

Last week, I had the privilege of co-hosting a panel discussion centered around living with a rare disease. Biotech company Amicus Therapeutics invited my podcast co-host, Kyle Bryant, and me to facilitate a panel with three teenage girls, each living with a different rare disease.

In 2019, the world seems to be more sensitive than ever. We push this narrative on social media to be positive and be ourselves, but then we’re immediately judged when we are. Why would I “dance like no one’s watching” when everyone is observing and criticizing? No matter how cautious…

Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there for their children with unconditional love — this is particularly true of those who have a child with Friedreich’s ataxia (FA).

I wear many hats: I’m a wife, mom, daughter, sister, friend, writer, etc. The most exhausting, constant, and thankless hat I don is that of Friedreichs ataxia (FA) patient. This hat is too big, ugly, and dominating. I don’t feel like myself in it. It doesn’t feel right on…

My nomadic lifestyle was always something I loved about myself. For some reason, I memorized a senior quote when I was flipping through my high school yearbook. I don’t even remember whose senior quote it was, and I didn’t know why it mattered to me so much. Looking…

Some months ago, I went looking for a new apartment for my friend and me to rent together. Since I’m pickier than he is, we settled on a price range, and he agreed to go with a place of my choosing. My roommate is a smart guy.

On June 9, 2019, history was made on live broadcast television for the disability community. Ali Stroker became the first wheelchair user to win a Tony Award, receiving the “best featured actress” accolade for her role as Ado Annie in the Broadway revival of the musical “Oklahoma!” For those…

Those days were sticky hot. Or, at least, that’s how they are in my memory. I made my way to the backyard; the bright green of the summer grass gave off a sweet scent, and the nearby clothesline stood at attention, though the poles that held it up…

We are just about halfway through 2019. I think this is a great time to evaluate my habits, my routines, and especially my goals. I usually start every calendar year with the motivation to accomplish and achieve like never before. In a lot of ways, I do achieve…

I’ve had the same core group of friends for almost 10 years. We’ve been through many milestones together: First cars, proms, parties, boys, and graduation are some of the experiences we’ve shared. We’ve talked about moving in together. I’ve thought about how cool and fun it would be to share…

Lately, I have experienced a worsening of one of my most daunting symptoms of Friedreich’s ataxia (FA). I have numbness and pain in my arms and legs, which causes restless legs at night. Unpleasant sensations in my legs create an irresistible urge to move them, making it difficult to sleep.