I have been in many social situations where I have blown it. Almost every encounter, actually. I plan to relay a certain message, and my words come out differently than I’d intended. It’s ironic that I majored in communication but lack the skills to express myself.
Fighting FA - a Column by Frankie Perazzola
I can’t believe it’s February 2020! This is an important month for the rare disease community as we unite and acknowledge one another’s illnesses. Rare Disease Day falls on the last day of February — a rare month with its fewer days. It’s even rarer this time because 2020…
What Kobe Bryant Meant to Me
The world is still in shock over the loss of NBA legend Kobe Bryant. A heaviness lingers over Los Angeles, along with an overwhelming sense of, “What do we do now?” I can’t believe I am writing this column. I won’t talk about Kobe’s accolades or his accomplishments as…
We’ve all heard about the monsters under the bed that keep us up at night. Well, the monsters weren’t to blame. I was having awful leg cramps. I would wake up from a deep sleep in excruciating pain. My middle toes felt as if someone was…
Being a writer without the ability to write is a conundrum. I think about it often, especially when I write these columns. I never realized how much I wrote until that ability was slowly taken away. When I was younger, I loved to write. I would use every colored…
We made it! A new decade is here, and the atmosphere seems a little fresher. For now, at least. I hope everyone enjoyed their holidays and spent them however you wanted to, with or without family. My previous columns about the new year consisted of sharing my plans for…
It’s the end of a decade and the beginning of a new year. At this time, many of us make New Year’s resolutions and set our goals for the year ahead. In the past, I have made resolutions that weren’t realistic or achievable; whether it was losing a lot…
It has always been a challenge for me to remain in the present. I frequently reminisce about the past and think about what I should have done. Does your brain remind you of your embarrassing moments when you are about to fall asleep? Same with…
My anxiety kicks in when I go out. Between choosing an assistive device, worrying about the accessibility of the venue, and anticipating stares from others, it can be overwhelming. The anxiety is so debilitating at times that I simply choose to stay home. I didn’t…
My family and I recently took an incredible vacation to our motherland, Italy. We have talked about taking this trip since I was a kid, but never had the time or the money. Now that my parents are retired and my brother and I are older, the timing…
Recent Posts
- When I focus on what I can control, problems become opportunities
- Researchers spot new ultrasound patterns across peripheral nerves in FA
- I try to control others because FA has left me with so little that I can control
- Using my unexpected platform to be a positive role model
- First person in FA FALCON trial receives SGT-212 gene therapy dose