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FARAFARA Cure FA

UCLA/FARA Symposium

UCLAsym2016

Hopes and Heroes

Hello! My name is Mekayla, I’m 18 years old and a senior in high school! I was diagnosed with Friederich’s Ataxia in July of last year. My hobbies include dancing (which I’m still trying to do!) and babysitting my nieces and nephew. 

About a week before the symposium my mom had thrown around the idea of possibly going to UCLA. We have never been to anything like it before, and my mom and I agreed that it would be an amazing experience and very informational! 

 

MekaylaHolmSo, something that we thought would only be a dream became reality when my mom found cheap flights going into LAX. My parents introduced the idea to me over dinner and I was immediately excited! Then of course, my worrywart self, I also started getting nervous. I was nervous about meeting new people and what information I was going to find out…

But, as a family, we went to the meet and greet dinner the night before the symposium, and all my nerves were gone! I got to meet one of my biggest inspirations- Kyle Bryant. I started following his story ever since I was diagnosed. I also started to get very comfortable with the staff from FARA and began to learn some names!

The next day at the symposium was absolutely wonderful! We started out our day eating lunch with Vijay, who’s a researcher from UCLA! He gave us so much information about the gene therapy that they’re working on with the mice. It was so awesome to know that he has first-hand experience with this research!

Next on the list for the day was talking about the different trials. This part was most exciting to me, because I received hope from 3 different drug company reps for a cure for FA. Seeing all the different people trying to help the FA community filled me with happiness.

During the break I got to meet more people with FA, which was a new experience for me. I had never met anyone else with FA besides my brother, so I didn’t feel so alone anymore! One of the people I met, I now am texting, and starting to get to know her better!

Concluding the symposium, were the two researchers who gave ample information (some things even I as a biology nerd had a hard time keeping up with!). One presentation on gene therapy-Vijay and another talking about bio-marking, both of which were very intriguing.

Overall, I have to say this trip was a success! My family and I couldn’t have asked for a better outcome with all the people we got to meet, and all the information we received. Awesome job to FARA for making this opportunity possible!

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My little sister Mekayla and myself were both diagnosed with Friedreich’s Ataxia in July 2015. Our experience at the FARA Symposium @ UCLA was phenomenal. Being so recently diagnosed, my sister and I hadn’t gotten quite as established in the FA community. So not only were we learning up to date information about our disease, but we were also meeting other people with FA for the first time. I had never met anyone but my sister who had an inkling of what I was going through. To not only have fellow FAer’s there, but getting to personally meet Kyle Bryant and Sean Baumstark? To learn about a movie called The Ataxian that is going to help spread awareness for FA? To meet and converse with the scientist who figured out how to turn on and off the FXN gene in mice models? Well, besides praising the FARA Symposium, I’d also like to thank them! Surely aided by our exposure to information on new trials at the Symposium, my sister and I were able to find a trial we had high hopes for and were accepted into their study! We both hope to attend more events like the Symposium to stay active in the community.

sethholmcommunitysignatureHolmFamily

Hello! My name is Frankie Perazzola, 23 years old, born and raised in San Pedro, California. I was diagnosed with FA in June of 2015 and right now, I am still ambulatory. I attended the January 2016 Friedreich’s Ataxia Symposium at UCLA and I had a wonderful experience. Since being diagnosed, I haven’t met anyone with FA until I went to the symposium. I had received the email informing me of the event a couple months prior.

The first person I saw was Kyle Bryant. He sat at the table with my family and myself for lunch where we got to exchange stories and pick each other’s brain a bit. In a star struck daze, I walked over to the room where the symposium was being held and locked in for the most informative afternoon I’ve had since college. We heard about three upcoming and running clinical trials as well as being informed on gene therapy models on mice and how effective it can be in the future of finding a cure to FA.

The day of the symposium I was also informed my labs cleared and I would be starting the STEADFAST trial in two weeks! It just so happened that the representatives from STEADFAST was one of the three companies to present their trial at the event. After everyone had given their presentation, the remainder of families had stayed behind to take pictures and mingle. This was definitely my favorite part of the symposium. I met other people my age with FA as well as their families and I got to make life-long friends. I have never felt so comfortable and in my element since receiving my diagnosis. Definitely looking forward to going to future events like this!

frankieperrazolacommunitysiFrankiePerrazola

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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