Fighting FA - a Column by Frankie Perazzola

Following my Friedreich’s ataxia diagnosis in June 2015, one of the first things the doctors told me was that I would progressively lose my ability to live independently and that I would need assistance in almost every aspect of life. The diagnosis alone was already a lot to…

Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, I had two speaking engagements in Baltimore, Maryland. The flight from Los Angeles was five and a half hours…

Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with such a serious illness. No matter how much you want to keep to yourself, you must know that whatever…

The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, Los Angeles (FARA/UCLA) FA Patient Symposium was extremely informative. FA specialists, FARA, and pharmaceutical companies all gave presentations…

Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and…

Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had to take a break from writing for such a public audience because, to be honest, I just needed some…

  Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or existing ones). One of my goals every year, much like many of my peers, is to raise awareness for…

With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, I never thought I’d be here.” And yet, here I am again, repeating that tradition. 2017 was filled with…

As if public restrooms aren’t already a headache for the average person, being able to use only the handicap stalls is one of the most frustrating processes I and other wheelchair users face. I have been on both sides of the spectrum as far as being able…

I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span of two years. I went through the entire process of accepting that I needed a cane, getting the…