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FARAFARA Cure FA

Frankie Perazzola

FrankiePerazzolaName: Frankie Perazzola

Age: 24

Where do you call home? A beautiful little town, San Pedro, California.

Education: B.A. in Communication from Arizona State University.

What's a typical day for you? Everyday is different but, I always start my day with stretching/meditation and a nice a cup of coffee. I make it a point to workout everyday and keep my mind right. I am in the process of starting my own consulting business ,so I have definitely been busy with paperwork and building my brand.

How long have you known you are living with FA? It has been a little over two years! I was officially diagnosed in June of 2015 at the age of 22.

Are there any others with FA in your family? Nope! I like to think of myself as being the lucky one in the family (:

Describe your transition from walking to walker/wheelchair? I am still mobile as of now with the help of a cane , walker or wheelchair depending on the event or activity. Its been quite the experience learning how to adapt but I am starting to get the hang of things...I think. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I work with a personal trainer who helps modify my weight lifting routine and focuses on keeping me strong. Also, I do physical therapy 2x a week for about 2 hours. Lots of stretching, yoga and meditation because it helps me in maintaining a limber body and strong mind.

Do you have any hobbies or special interests? Cooking, reading and writing are all passions of mine. I enjoy cooking because it is something I feel in my soul and feel like I am physically giving someone my love and creativity. In a way, cooking has become therapeutic and I am forever grateful. I push myself in the kitchen physically and mentally and the finished product is always an accomplishment. There is a feeling of pride and exhaustion when finally get to eat what I have created. Its the only time I know my limits are endless in what I can create.

I enjoy watching basketball, preferably the NBA. To be an athlete once myself and having to adapt to a physically limited life-style, I appreciate movement. In a sense, I see basketball as an art .There is just something spectacular about a six foot 11 man being able to fearlessly drive in the paint. I think its amazing how much passion and love there is in the game and for the game. Gaining this new perspective on athletes and the human body in general has been a humbling experience.

When FA gets you down, what do you think/do to feel better? Honestly, I just think about how fortunate I am in every other aspect of life. I have a roof over my head, food in my stomach, family and friends who love me and I have gotten to experience a “normal” life until I was 22.

What is one way living with FA has POSITIVELY affected your life? Being diagnosed with FA has made me a more health conscious, love the life that I have and my future, and I appreciate every ability I still have. For instance, when I walk to bring a cup of water into my room, I sit and acknowledge the entire process and thank God I still have that ability right now. Its not something an average person would think about but I do a happy dance every time I accomplish it. Ultimately, I have learned to appreciate all the small things.

What is a favorite motivational quote of yours? “If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward.” -Martin Luther King Jr.

What is a piece of advice that someone with FA has given you that encourages and inspires you? My friend Sam inspires me everyday, but I read this text every morning to help me get my mind in the right space: “We all cope in different ways. For me, I need to keep doing my thing until I can't do it anymore. I always get myself down by comparing myself to others. All you can do is whats best for yourself.”

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Even though I was sort of newly diagnosed myself; Learn to forgive yourself- I struggled with this at first, I would get angry and frustrated when I dropped a plate of food, broke a glass or was so tired that I couldn't walk any longer.Everyday, we make a choice to be positive or harp on the bad things. Now, when I drop something, stumble or can't walk; I chuckle, try to correct my movements and move on. FA has been a blessing in a devilish disguise, but never the less I am blessed! The more positive I choose to be, the more good days I have. See how that works?

What is the first thing you want to do when a cure/treatment to FA is found? I’d play a game of softball again, I really miss it.

FrankiePerazzola


About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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