Columns

“Ready?” my cousin asked. “I guess,” I said halfheartedly, ashamed, and eager for this to be over. My cousin easily lifted me onto his back. I remember thinking how strange it was to be carried around by another high school senior, but…

I recently visited my neurologist and FA clinical team at UCLA. I am participating in a clinical trial, and UCLA is my nearest study site. Oftentimes, clinical trials are “blind” and placebo-controlled, meaning multiple patient groups take an investigative therapy or…

“The Zeego Tales” track the wonders of my new life with my service dog, Zeego. It has never been my style to ask for help. Call me “strong-willed,” if you want to put a positive spin on it, or “stubborn,” to be more accurate. …

I was sitting on a plane yesterday thinking about some of my deadlines when I recognized that I was feeling overwhelmed and exhausted. While I wasn’t frustrated and my level of functioning wasn’t affected, I noticed that I was tired and feeling as if time was getting away…

When I have an initial conversation with someone about my FA diagnosis, the person almost always asks, “Are you in pain?” At first, I didn’t experience any pain whatsoever. Later, I started having restless legs and sporadic, debilitating foot cramps after the days I pushed a little too…

After months of planning and executing, my family’s grassroots event, the 7th Annual Mother’s Day 5K Race for Christina, took place last Sunday, May 12. Two months ago, I wrote the column, “How to Plan a Grassroots FA Event,” which includes our planning checklist. My family and I…

Friedreich’s ataxia (FA) is a heavy diagnosis. It is a relentlessly cruel progressive disease without a treatment or cure. It’s a lot to process and handle, challenging my worldview and self-worth daily, hourly, and by the minute. I don’t want to have FA. I want to be “normal.”…

“Is everyone here?” Dr. Grabczyk asked from the head of the table. The old restaurant buzzed with the lunchtime rush, but the gathered members of the Louisiana FA community — five of us affected by Friedreich’s ataxia, along with those who had traveled with us — managed to…

I remember feeling overjoyed and honored a year ago after I received a package in the mail. It was a small box containing beautiful gold-knot post earrings and a note that said, “Will you be my bridesmaid?” It was from one of my closest friends, Erica. Without a second thought,…

“I can’t believe we found this,” I said to my friend Jennifer, holding the manila folder against my lap. “Do you think we should open it?” The sun shone brightly this spring day in 2010, but neither Jen nor I could see it. We were working…

Others. Community. Support. Help. Cheerleaders. These are the words that have been flooding my thoughts over the last couple of weeks. If you consider my writings, the podcast that I co-host, or the documentary film in…

This past weekend, I stepped back in time and visited my alma mater, Johnson & Wales University. I made the trip to attend the Providence Alumni Reunion Weekend with my husband, Justin. The event was in Providence, Rhode Island, about five hours away from our home in Philadelphia.