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FARAFARA Cure FA

CHOP Symposium 2015

2015CHOP1Columbus Day weekend is my favorite weekend of the whole year. It is the one weekend a year when I go to Philadelphia and have the opportunity to see and hang out with my FAmily.

This Columbus Day weekend did not disappoint. On Saturday, my mom drove my brother, Chase, and I out to Philly so I could attend the Ambassador training program. This was so cool because instead of meeting and talking over WebEx, the FARA Ambassadors were able to sit around a table and learn more about FARA. One amazing thing that I learned was that FARA’s budget for 2015 is about $5 million. However, a mere ten years ago the budget was about $500,000! It amazes me how much FARA has grown in such a short amount of time. A majority of it can be attributed to grassroots fundraising along with rideATAXIA and the Energy Ball.

 

On Sunday I went to rideATAXIA with my family. It is a truly inspiring event to be a part of. I cannot express the amount of happiness I feel seeing everyone come out to ride for a cure. Not only is that amazing, but also the ability to ride my own trike along with everybody! In 2014, I was one of the recipients of the Ataxian Athlete Initiative (along with my brother Chase who also has FA) so I rode the 10 mile route. The big lunch put on after the ride so I was able to hang out with my family and friends who came out was really the icing on the cake.

Monday was the day of the CHOP Symposium. There is so much research going on to find a treatment and a cure, it was so cool to hear from all the doctors and scientists. I was also one of four Ambassadors to speak on a patient panel about going to college and living with FA. College is no easy feat for anyone, but adding FA into the mix makes it more challenging. It was such a great feeling to be a part of the panel and my biggest hope is that parents and young people with FA alike heard our stories and left the day knowing that college is possible.

The training was awesome, the bike ride was so much fun, and the Symposium left me full of hope. I spent time with old friends and made new ones. It was an amazing weekend and I can’t wait for next year’s!

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I was recently given the opportunity to participate in the CHOP FA symposium in Philadelphia. I was honored to participate in the weekend's events in two different but overlapping ways: first, as a member of the FARA Ambassador Program and, second, as a member of the community of FA patients. If I were to choose a single word to describe the various events of the weekend, it would be 'inspiring'. It's difficult to explain any individual event there, the attitudes of the many attendees, or the feeling we all had as we all left without using that word.

2015CHOP3The first such event was a focus group with a pharmaceutical company. They sought the input of FA patients to help them find an appropriate deliver mechanism for a treatment for FA. I suppose it doesn't sound very exciting but I have one important argument for you if you feel that way. Though the injection mechanisms contained only water at the time, we were able to imagine the day when they will contain more than that; the day a treatment/cure is in there. So many Ambassadors were present that it became necessary to split us up into two separate focus groups. We then reconvened for the next part of our weekend: the FARA Ambassador training session.

The session included a lesson on FARA itself. We learned about the organization's growth from its humble beginnings to its not-so-humble present. The best part was knowing that we haven't witnessed FARA's final destination yet. We understand that their growth will continue until the cure is found. Learning where research was before FARA as opposed to where it is now really proved that our shared goal of curing FA will be realized. The members of FARA are truly the people we want on our side in this fight. We also learned that the fight isn't solely their's to win. There are things we have to do to help. We heard from various members of the program about how they are doing their part to supplement FARA's efforts. We emerged from the training with a call to action. If we are to achieve success in our common goal, it will be a joint effort. We have to continue to do our part for FARA.

The weekend, though focused on learning, included some fantastic time to socialize. We got a taste of that following the training. For many of us, it was our first time meeting each other in person. These are people with whom we've worked and become friends through the Ambassador Program. It was already evident to me that these were some of the strongest, most incredible people I'll ever meet. The feeling of getting to know them on a personal level now is one that I can only describe by repeating myself; inspiring.

2015CHOP4The grand finale of the weekend was the CHOP FA symposium. It was complete with detailed descriptions of the many clinical trials available to us as FA patients. In addition to learning how we could participate in these trials, we were taught the potential benefits of these trial drugs and the science behind them. It was the first venture into the scientific side of FA research for me. Though this went way over my head and was, at times, impossible to follow, I gained a sensation of comfort. I certainly don't understand it but I am now reassured that there are people out there who do. These are absolutely brilliant people who I trust to figure this out.

The symposium concluded with a panel of FA patients on which I was invited to speak. We spoke about our processes of choosing a college, our experiences once we were there, and the things we would do differently if we could do it all again. We introduced some obstacles that arose as FA patients and explained how we overcame them. Finally, we gave some parting advice to future FA students and, perhaps more importantly, to their parents.

This was my first time attending the symposium. It filled me with hope and confidence that a cure is on the way. What an opportunity it was to have my first symposium experience combined with my experiences with my fellow ambassadors, rieAtaxia, and the chance to address other attendees! It was an unforgettable experience for which I am truly grateful and could never take for granted. To everyone who played a part, however small, thank you so much for that weekend.

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The first time I went to the CHOP symposium, I drove in to Philadelphia Sunday night and attended the meet and greet, then went to the symposium the next day and left immediately after. And it was great—no matter how much time you’re able to spend in Philly, I would fully recommend it. You can’t imagine how fantastic it feels to be in a room full of others who directly empathize with you until you experience it for yourself. As a biology student, I love the scientific aspect of the symposium.

2015CHOP5But this year, I did things a little differently. I decided to fully immerse myself in the weekend’s events. First up was the FARA Ambassador training on Saturday. Jen Farmer gave us the brief history of FARA (such an amazing story; what Ron Bartek has accomplished for our community in the past 15 years or so means the world to me and so many others), and then Felicia Derosa let us know of all the fundraising done for FARA and what an impact that has made. To my excitement, she gave my mom a personal shout-out for laying out The Advocate (check it out guys—it’s gorgeous).

After the training, I sat with Jen and talked about my career goals with her for a while. I’m planning to pursue a degree in genetic counseling after I graduate, so imagine the validation I felt when I found out the Executive Director at FARA has her degree in genetic counseling! Our talk was further verification for me that I’m on the right path, and showed me that I’ll still be able to find a job I love despite my physical limitations. If you’re interested in learning more, stay tuned! My FARA Fridays interview with Jen is going to be published next month.

The next day was rideATAXIA Philly, which I won’t spend much time on here, only to say that it was my first time and I got to try a trike for the first time and it was awesome!

2015CHOP6Sadly, Monday came next and that meant the weekend was nearly over, but happily that’s symposium day! As before, the science was interesting, though I spent most of my time trying to calm the butterflies in my stomach caused by the ever-nearing panel on college that I, Preston, Abby, and Brendan were going to be speaking on. With the moment of terror upon us, I confessed to Kyle how nervous I was. Knowing how incredible of speaker Kyle is and that he’s been on TV and in movies—you name it, he’s conquered it—his response of, “I’m just introducing you guys and I’m terrified,” was unexpected and immediately comforting. We topped this off with a high-five, and we both missed the first time and came pretty close to smacking each other in the forehead instead. Quintessential FA.

The one comment I made that I vividly remember was “When I moved away from home for the first time to live in the dorm, I didn’t think I could do it and my parents certainly didn’t think I could do it, but I’m doing it,” to which the room erupted in cheers. I think this exemplifies what the weekend really meant to me. When any one of us have a small success against or in spite of FA, we’ve all succeeded a little bit. That’s what the weekend was—making connections, fostering community, and uniting for a common cause. Remember, it is together that we will cure FA!

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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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