Columns

Serena Lawrence hired me as a columnist for Bionews Services. I badgered my friend Frankie, who writes the column “Fighting FA,” into recommending me. She gave my name to Serena, who walked me through the onboarding process. I was touched by…

I recently attended the Global Genes RARE Patient Advocacy Summit in San Diego. While there, I had the honor of co-facilitating a panel discussion during one of the main sessions. I co-host a weekly podcast with my friend Kyle Bryant, and…

Junior high school was one of the hardest times of my life. Now that my children are at a similar life stage, I recognize that they are struggling, too. When you add Friedreich’s ataxia (FA) to the equation, the teenage years seem downright unbearable. Having a physical disability makes…

My family and I organize an annual grassroots event called the 5K Mother’s Day Race for Christina. This May was our seventh year hosting the event to bring people together to raise awareness and funds for Friedreich’s ataxia research. Hosting an event like this one involves months of planning.

My phone alerted me to a text message. “Would you be devastated if we canceled this week?” It was my friend Will, canceling our weekly appointment yet again. I wasn’t upset, but understood the back-and-forth banter of our friendship. I sent…

I’ve noticed that I often get held up or feel paralyzed by the excuse of not knowing what to do. I label it as an “excuse” because I believe that doing nothing is never the right thing to do. Of course, there are some things we…

My husband, Justin, and I have an annual tradition. Every summer, we go to our second-favorite city, Baltimore. We have been making this trip to “Charm City” for four years. We fell in love with Baltimore and keep returning for many reasons. The city, located near the water, is beautiful,…

“But the bird fly! I want jump off the roof!” My 3-year-old mind believed this totally. I stamped my tiny shoe. I had made up my mind and I was ready to take action.  My mom had discovered some old feather dusters as she…

I recently traveled to the bona fide destination wedding of some dear friends. The groom has had a significant and recognizable impact on my life so far. It so happens that the “recognizable” factor is what led to his first meeting with his now-wife, too. You…

I celebrated my birthday Aug. 24. I wrote in my recent column about the importance of looking forward with a positive attitude despite my diagnosis of Friedreich’s ataxia (FA). Because my FA is progressing faster than my family or I had expected, I have learned to accept that I…

“The heart really is an amazing machine,” the technician mused in the dim examination room.  I was shirtless on the sterile white bed with seven wires attached to my chest. The wires were connected to a sonogram, which had a screen showing black-and-white images of my…

There are more than 7 billion different opinions in the world — one for each person on this planet. I’m not an authority on much, but I think many of those 7 billion people would agree with this ideal: We are each responsible for our…