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Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t…

This is the final countdown. The big day has finally come. Tomorrow, Saturday, Oct. 20, I am marrying the man of my dreams, Justin. These days, it is hard to enter a relationship, especially when living with a rare disease that one can’t even begin to understand. Before I met…

I recently began participating in a 48-week, Phase 2 clinical trial for Friedreich’s ataxia. The way I understand it, the study’s investigational treatment is designed to make the cells in my body that are damaged by FA work more efficiently, or more normally. I’m hopeful that this can slow…

In this reflection on a vacation to the Turks and Caicos Islands, I discuss the purpose of my trip: my incredible mom. Check out my earlier thoughts on traveling with Friedreich’s ataxia here. At the resort, I found a spot where the…

My family and I have always been religious, with strong beliefs, faith, and morals. My mother is Catholic and raised my sister as such. My father, an Episcopalian, raised my brother and me in his church. From elementary school to high school, I attended church and Sunday school weekly. I loved…

First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos. In the cramped seat of the plane, nothing was going right. Moments earlier, in the…

Sweaty palms, excitement, hope, and motivation — I’m preparing to be in position at the starting line at the rideATAXIA Philly event. The annual bike ride takes place in Southern California, Northern California, Dallas, Chicago, Philadelphia, and Orlando. This fundraising event seeks to empower…

“What’s next for me?” I remember asking my friend, sitting across the table from me at a popular and kitschy restaurant. My friend was used to me being melodramatic; the brutal somberness I’d conjured was juxtaposed by the checkered green tablecloth on which I…

Recently, I saw the following quote shared on social media. It stands out, particularly when I am making plans to go to various public places. “Ramps should be the standard. Automatic doors should be the standard. Elevators in…

  The first time I ever heard of Friedreich’s ataxia was the day I was diagnosed with the disease in 2013 at the age of 25. To say I was in shock is an understatement. I was scared, overwhelmed, confused, angry, eager, and desperate. So, I am going to try…

“I get him, and he gets me,” Cassandra states as if it’s obvious. Her boyfriend Roland can be seen in the background of this shot, acting goofy and dancing in his wheelchair. As they sat at a table in the mall’s food court, Mary had…

Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — “just because.” At first, I couldn’t write a word without crying, but eventually everything spilled out so naturally. First…