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:…
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Every fall, I find myself being thankful for my family and friends and hoping that they are in good health. I am also grateful for the relationships I have with other Friedreich’s ataxia (FA) patients and their families. These…
“It is time,” I thought to myself. A number of loved ones had presented the idea of transitioning from a rollator to a wheelchair out of concerns for my safety. But I believe it’s a decision that should be…
Members of the Friedreich’s ataxia (FA) community are waking up each morning with extra grateful and hopeful hearts, thanks to the recent news of a successful clinical trial sponsored by Reata Pharmaceuticals. Ron Bartek, president of the…
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…
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…
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…
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…
I often revisit a memory from eight years ago when my family and I were in a patient room at Johns Hopkins Hospital. I had undergone multiple tests, and as we waited anxiously for the results, the neurologist stepped…
Living with an invisible disability is not easy. Symptoms that cannot be seen are difficult for outsiders to understand. Friedreich’s ataxia (FA) entails neurological issues, heart conditions, fatigue, and chronic pain. Some patients may use mobility aids…
I read an article recently in The Philadelphia Inquirer that affected me on a personal level and left an impression. It addresses the poor condition of sidewalks and curb ramps in Philadelphia, and the difficulty they pose to people…
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…
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…
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