Columns

The world celebrated Rare Disease Day on Feb. 29. Rare Disease Day is a global initiative to raise awareness for over 6,000 rare diseases that affect an estimated 300 million people worldwide. This year’s message was: “Rare is many worldwide. Rare is strong every day. Rare is…

The podcast I co-host, “Two Disabled Dudes,” is celebrating a major milestone this week: We recently broadcast our 100th episode! It’s been a wild three years, and neither my co-host, Kyle Bryant, nor I expected to make it…

When my children were born, I had an irrational fear that something bad would happen to me, and I wouldn’t be here to take care of them. As they got older, I replaced that worry with the fear that something would happen to them. As they became more independent and…

Mental health is a significant yet overlooked aspect of dealing with a chronic illness. While it may be taken into consideration, it’s not often treated with sufficient seriousness. Continual learning and adapting to a new way of living can be stressful. Losing relationships, adjusting…

Living with Friedreich’s ataxia (FA) has taught me to appreciate the little things. I was reminded of this when I discovered a new symptom of my FA journey: bladder control and the urgent need to use the restroom when away from home. Public restrooms have become a significant need in…

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…