Columns

This past weekend was St. Patrick’s Day. Almost every bar, restaurant, and establishment had various specials going on all weekend since the holiday fell on a Sunday. The venue where my husband Justin and I got married, Washington Crossing Inn in Pennsylvania, hosts special events and also…

Sitting at my computer in my room, I barely noticed that everything had gotten dimmer. It wasn’t until I looked up that I noticed that one of the four bulbs on my ceiling fan was smoky gray and lifeless. I rolled my eyes at the slight inconvenience, then…

I’m convinced that we all think we’re unique in the following regard: Something about who we are, or our circumstances, excuses us from being better or from being the best version of ourselves possible. We’re all pretty darn good at coming up with excuses as to why…

This week, I wanted to do something a little different. As an FA patient diagnosed only four years ago and with no sign of a heart condition yet, I understand that not too many people can relate to my views on working out. My friend Joey has a…

Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the first day of spring on March 20, and the new season cannot arrive soon enough for me. Although my home city of…

  I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing to do nothing. So, whether I’ve been super productive and finished all my work earlier…

“Weren’t you just in a wheelchair? Why are you using a walker now? Are you getting better? If you can walk, why do you even have a wheelchair?” I love when genuinely curious people ask me questions. With multiple assistive devices and an invisible illness, I have learned…

Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices to raise awareness and educate those who may be unfamiliar with the rare disease and Friedreich’s ataxia communities.

I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to a single parent or a disabled child. I become fascinated with their…

I’ve been down this road before and it doesn’t end up anywhere good. Following that thought, I swallowed the pill laid out for me and rushed to the bathroom to finish getting ready for school. As a teenager, I was pretty ambivalent.

People around the world observed Rare Disease Day on Thursday, which gives patients, caregivers, and advocates the opportunity to share their experiences and raise awareness of the more than 7,000 known rare diseases. Rare Disease Day is organized here in the U.S. by the National Organization for Rare Disorders…

One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid. For me, the thought of needing a device to get around in my day-to-day activities was soul crushing. I thought that it signified the…