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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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…
My birthday was last weekend. I was so excited when my best friend, Lizz, and her bridesmaids decided to host Lizz’s bachelorette party that weekend. What better way to celebrate my birthday? Her wedding is less than a month…
August is coming to an end. This is always my favorite time of year because my birthday rapidly approaches. To me, fall indicates a fresh start and signals new beginnings to look forward to. Tomorrow, Aug. 24, I will…
Friedreich’s ataxia (FA) patients face multiple symptoms that can help confirm a diagnosis. The five most common symptoms are difficulty walking, sensory changes (such as hearing loss, involuntary eye movements, vision impairment, and speech problems), scoliosis,…
There is nothing better than the feeling of the ocean air in my hair while I bask in the hot summer sun on a beautiful beach. I’ve just described my family’s happy place: Stone Harbor, New Jersey. We look…
It is hard to believe that July has come and gone, and that the summer season is officially coming to an end. In addition, my birthday month, August, has fast approached. This year, I will turn 29…
Summertime is all about enjoying the outdoors with warm weather on your skin. The season is full of barbecues, family picnics, festivals, and more, with the people you enjoy most. Everyone needs to take precautions when in the heat.
Since receiving my diagnosis of Friedreich’s ataxia (FA) back in 2011, I have attended two series of physical therapy sessions. I was an outpatient at the local University of Pennsylvania hospital branch in 2014 and 2017. Initially,…
As I mentioned in my previous column, my husband, Justin, and I like to complete our weekly chore of grocery shopping early in the morning. The two main reasons we started doing this are that we get a…
When a person lives with a chronic illness, such as Friedreich’s ataxia (FA), they will do anything to find shortcuts and ways to make life’s daily activities easier. Taking the shorter walk home or taking breaks…
Last Sunday was Father’s Day. One dedicated day to honor each of our parents is not enough in my view. Parents are often role models who are always there for their children with unconditional love — this is particularly…
On June 9, 2019, history was made on live broadcast television for the disability community. Ali Stroker became the first wheelchair user to win a Tony Award, receiving the “best featured actress” accolade for her role as Ado Annie…
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