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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Lately, I have experienced a worsening of one of my most daunting symptoms of Friedreich’s ataxia (FA). I have numbness and pain in my arms and legs, which causes restless legs at night. Unpleasant sensations in my legs create…
I am originally from Bucks County, Pennsylvania, about 25 miles outside of Philadelphia. This beautiful area combines countryside with villages and downtown charms. It is rich in history, art, and culture, with gourmet dining, breweries and wineries, and award-winning…
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…
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…
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…
Living in a major city like Philadelphia, my go-to mode of transportation is the subway or the bus. My husband, Justin, has a car he parks close to our apartment to have available when needed. But if I…
When living with Friedreich’s ataxia, one learns to accept “what is” and to celebrate small victories. For example, I have recently discovered that cleaning and tidying up around my one-bedroom apartment in Philadelphia is a very rewarding…
I had my annual Friedreich’s ataxia checkup last week at Children’s Hospital of Philadelphia, which hosts a Friedreich’s Ataxia Center of Excellence for patients and their families. I’m very fortunate to have this facility and my…
When my sister, brother, and I were younger, our parents would take us on trips to various museums. These memorable times included day trips to the art or science museums in our city of Philadelphia. On the…
This past weekend was St. Patrick’s Day. Almost every bar, restaurant, and establishment had various specials going on all weekend since the holiday fell on a Sunday. The venue where my husband Justin and I got married,…
Daylight saving time happened last weekend, and the changing of the clocks heralded in longer days and warmer weather. I am eagerly anticipating the first day of spring on March 20, and the new season…
Rare Disease Day was observed on Feb. 28. However, we don’t have to limit our advocacy to a single day. Every day is an opportunity to use our voices to raise awareness and educate those who…
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