Columns

My teacher and my best friend’s mom talked amid the gaggle of parents picking up their kids from middle school. I was within hearing distance as they spoke, but neither one noticed. I remember my teacher remarking that the woman’s son and I used to do…

If you follow me on social media, you probably saw this column coming. In fact, I feel like I can’t write about anything else this week other than my recent travel experience. To be fair, I’m not writing out of frustration or anger, and I’m not…

I remember meeting my dear friend Mary for the first time. Mary also has Friedreich’s ataxia (FA) and is the mother of four beautiful children. Five years ago, I attended the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of Philadelphia. It was my first time attending the conference.

I saw one of my middle school teachers the other day. Two decades have passed since I was in her religion class. She saw Zeego, my service dog, as he curiously sniffed around the occupational therapy clinic where my friend Will works.

I’m realizing that short-term disability insurance provides value beyond the financial benefit. Of course, the continued flow of income is important when it helps sustain your overall well-being and allows you to remain independent. My state-sponsored disability insurance helped me to stay on top of my recurring bills,…

I have been in many social situations where I have blown it. Almost every encounter, actually. I plan to relay a certain message, and my words come out differently than I’d intended. It’s ironic that I majored in communication but lack the skills to express myself.

Did you know that one in 20 people will live with a rare disease at some point in their lifetime? Rare Disease Day, on Feb. 29, is a global initiative to help raise awareness of the more than 6,000 known rare diseases that affect an estimated 300 million…

The sky turned pinkish and the clouds became bright blue as the Louisiana sun reached its western-most point and began to retreat from this summer day. It was five years ago. My mom’s friends had brought their 7-year-old nephew over to swim. I was playing…

Change seldom happens by accident or coincidence, especially when it involves other people, such as with rules, laws, policies, job promotions, and so on. The weather and the ocean tide will change no matter what we do or don’t do, but the rules of aviation and fishing will…

I can’t believe it’s February 2020! This is an important month for the rare disease community as we unite and acknowledge one another’s illnesses. Rare Disease Day falls on the last day of February — a rare month with its fewer days. It’s even rarer this time because 2020…

I have a chip on my shoulder from living with a rare neuromuscular disease. I feel the need to be accepted and welcomed by today’s society, and I set high expectations for the people I meet. But I have come to realize that people with disabilities need to treat others…

I was the weird kid who asked my mom to fix me a plate of spinach as an after-school snack. Most of my friends only ate spinach to appease their parents and earn the right to dessert. Don’t get me wrong: I love cookies and cakes probably more than most…