Columns

It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain level of acceptance about our disease we gain a different understanding of life. When expressing myself, I try to…

My husband Justin and I returned last week from our honeymoon in the Bahamas following our beautiful wedding on Oct. 20. I was determined that I wouldn’t let Friedreich’s ataxia (FA) deter me from doing the things I wanted to on this trip. I also didn’t want to experience the…

First in a series. From the time we are toddlers, we start dreaming about the future. We want to be firefighters, teachers, rock stars, race car drivers, or in my case, a zoologist. So many exciting possibilities exist, and we want to do them all. As we get…

A continuation of a series of reflections on a recent vacation to Turks and Caicos. In this column, I take a rainy boat ride and am confronted by my uneasiness with asking for help. Read previous reflections here. ***…

In this reflection on a vacation to the Turks and Caicos Islands, I focus on time spent with my nephew Jace. Check out my earlier thoughts on traveling with Friedreich’s ataxia here. *** One of my goals on this…

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…