I recently rediscovered my passion for baking. My hopes and dreams should not be put on hold because of Friedreich’s ataxia (FA). I should not be discouraged from doing what I love. I take satisfaction in knowing I can enjoy an experience like everyone else, even if I have to do…
Columns
Is this even worth it? The noisy confusion was almost comical. Luckily, I was next to some friends in a corner of the hotel lobby. Taking a group picture of people with Friedreich’s ataxia (FA) was complicated. The majority of us were seated in…
The difference between determination and stubbornness is becoming more and more clear. With the recent fracturing of my hip and weeks of inpatient rehabilitation, I’ve found myself teetering on the thin line that separates the two. I’ve always thought of myself as a determined individual; someone…
My family and I recently took an incredible vacation to our motherland, Italy. We have talked about taking this trip since I was a kid, but never had the time or the money. Now that my parents are retired and my brother and I are older, the timing…
My passion for the hospitality and tourism industry has shaped my bucket list. I love to travel and explore new cities. During high school, I traveled to Europe three times with my school musical groups. It was an honor to visit Italy, England, and Ireland. Since being diagnosed with Friedreich’s…
Out of curiosity, I ran an online search of “Kyle Bryant,” one of my best friends. I call him the poster boy for Friedreich’s ataxia (FA), and the search results seem to agree. I scrolled past links to his employee page at the Friedreich’s Ataxia…
If I didn’t know that the endgame for physical therapy is to be fully functional again, it’d be easy to come up with excuses to just stay in bed right now. Physical therapy isn’t fun or easy, but it is a necessary friction. Thankfully, I am…
Scheduling my own doctors’ appointments was one of the biggest indications I was getting older. I remember how I felt when I first did it about age 18. I hung up the phone feeling so grown. From then on, I had no problem scheduling all my appointments. It gave me…
In a previous column, I wrote about rideATAXIA Philadelphia and the 12th Annual Friedreich’s Ataxia Symposium, hosted by the Children’s Hospital of Philadelphia. People with Friedrich’s ataxia (FA), members of their families, and caregivers can connect with one another and learn about potential treatments at these types…
A friend and I recently had an honest discussion, broaching topics like depression and the fear of death. I felt relieved afterward. My friend, however, presumed I was in despair, as most people seem to think that sad topics should only be discussed during difficult times. In the…
The topic of this column might be my ultimate excuse for not writing. Before I explain, I want to remind readers that I am an advocate for taking care of your health and prioritizing rest. I’m…
October is my favorite month. I love the feeling of new beginnings that comes with the crisp fall air. And I’m excited about two major Friedreich’s ataxia (FA) events that take place this month: rideATAXIA Philadelphia and the annual Friedreich’s Ataxia Symposium hosted by the Children’s Hospital of…
Recent Posts
- First-in-human trial now testing oral FA drug in healthy volunteers, recruiting
- Staying organized with FA isn’t easy, but it helps me cope with challenges
- The Heart of Living With FA: Two Stories, One Shared Understanding
- Finding reasons to be happy with Friedreich’s ataxia
- Experimental FA gene therapy targeting brain and heart earns EU orphan status