Before the #CureFA Mission

Before the #CureFA Mission
This post was originally published on this site

#cureFA , Joanna's story


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 Friedreich’s ataxia.

Since I started writing this column, I’ve noticed an increase in my followers on social media and with those who privately message me. It’s a strange feeling and I am truly amazed by the audience size of my column. To be honest, I never thought people would genuinely care about anything I had to say, but I guess that wasn’t the case. Because I am often asked about my life before FA and the origins of my personality, I thought it would be interesting to share that in the column so that folks can see who I was before my #cureFA mission.

I was born and raised in a small port town in Los Angeles, California, in a huge Italian and Irish family. I’ve always had close relationships with most of my family and that’s something I later learned to cherish. Fishing with my grandpa taught me how to care for boats and to chase a sunrise. He taught me everything, from how to take care of fishing equipment properly to slow dancing to oldies music out on the water.

Cooking with the women in my family started from diapers, which graduated to learning how to make my own pasta sauce at the age of 12. Ha! Preparing any kind of dish or having friends over for dinner is something I look forward to. I love to be able to give someone joy, comfort, and warmth from something I put my passion into. Cooking is one thing I will hold onto as long as I can until my progression takes that away, too.

As a kid, I played softball and soccer for years and went to summer and winter camp every year from 7 to 17 years old (I returned last year). I enjoyed writing short non-fiction stories and songs for fun and falling in love with every boy in sight. It was only my brother and me, so I never learned about makeup or how to do my hair until I was older — my mom was a complete tomboy growing up so she didn’t know, either.

Being a tomboy for my entire childhood is partly the reason I am an absolute sports fanatic. Growing up, my brother and my father raised me as a Lakers, Dodgers, and Rams fan. That’s the relationship we had — sports. We bonded over Kobe Bryant talk and potential trades while I bonded with my mom over shopping or running errands together. My love of watching basketball is what made me decide to pursue a future in sales and marketing at the NBA, or to be a season ticket representative. The fans, the energy in the arena during games, and my love for the game solidified that choice.

I attended college at Arizona State University in Tempe, Arizona, where I graduated with a bachelor’s degree in communication. It was the best four-year experience ever, and I am extremely lucky I got to experience college, carefree of health problems. It wasn’t until my junior year in college that I started to notice my body wasn’t cooperating with my brain. I noticed climbing up and down stairs was almost impossible without holding onto the railing or someone’s arm. That’s where my diagnosis journey began. I was diagnosed three years ago at 22.

A lot of my followers are people who have known me for years. That being said, I know who I was: The bad attitude and negativity I held, the poor decisions and actions I constantly repeated. I burned bridges and was selfish — I wasn’t nice and was mostly immature. But the magnitude of something as life-changing as Friedreich’s ataxia is just that — life-changing. I can’t begin to explain how small my usual “problems” become when it seems that my mortality is dangling right in front of me. Watching your body essentially deteriorate in front of your eyes is bound to make you change mentally, in some capacity. My personal change just happened to be drastic.

At the end of the day, I just want people to understand where I’m coming from, whether you’ve known me for years or we just met. I’m on a similar journey with a lot of you reading this in raising awareness. We just took different paths to get here.


Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. 

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Chris Comish serves as the Publisher of the website, and is responsible for directing the editorial focus as well as putting the finishing touches on many featured articles.