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FARAFARA Cure FA

USF Scientific Symposium and FARA Energy Ball 2014

The 6th annual FARA/USF Health Scientific Symposium took place at the USF Health Center for Advanced Medical Learning and Simulation (CAMLS) in Tampa, FL on Thursday, September 4, 2014. Researchers, clinicians, patients and families gathered together to hear upcoming research, possible treatments and patients’ inspiring stories of living with Friedreich’s Ataxia. This year’s focus was “what a difference a year makes” and all these three components were touched upon.

The FARA Energy Ball is an event held to benefit funds and research for FARA and USF Ataxia Research Center. $1.8 million was raised for research on Saturday, September 6th! Please read below for personal experiences shared by those living with FA...

 

Recently my parents and I traveled to Tampa for the Symposium and Energy Ball. After this, I can only describe it as “the best”. On Thursday evening (September 4th), I participated in the patient panel, and it was quite an honor to hear about all the FA research that is going on.

On Saturday (September 6th), we went to the Energy Ball. It was the first time I’ve been and I am already excited to go back next year. The night was filled good food, dancing and fundraising. To me, the greatest part was seeing everyone and getting to meet more “FAmily” there. A huge thank you goes out to FARA and everyone who made this event possible. Together we will cure FA!

 

 

The weekend started with the clinical symposium held at USF. I was overwhelmed by the love, support and dedication that the staff and researchers exhibited. It was very genuine, and very inspiring to know research is pressing forward quickly. As part of the FA community, I live with the belief that there will be a cure. My mother often tells me that I will be part of the cure. I left feeling even more confident that this will become true in the not so far future. The addition of having FA patients on the panel resonated with me. Sam Bridgman and Emily Young shared familiar stories of home and personal experiences. We are FAmily!

“My daughter has taken me to places I would never have gone, on a journey we did not choose to be on, but one that has changed our lives all for the better.” – Alexis Penn “My daughter has taken me to places I would never have gone, on a journey we did not choose to be on, but one that has changed our lives all for the better.” – Alexis PennThe evening of The FARA Energy Ball was full of non-stopping energy. From the moment I arrived, the energy buzz kept growing. It was great meeting so many supporters of our cause. And it was truly real, meaning that everyone I came in contact with wanted to know “my story”- no mere Hi, how are you. In fact, interested supporters spent a minimum of 15 minutes in dialogue with us wanting to know all about my family and I. Talk about an emotional overload! My heart strings were playing beautiful music.

Paul and Suzanne Avery’s presentations to the attendees were heartfelt and comforting. I felt their arms wrapped around my family. They are an unbelievable couple making unbelievable things happen. They are moving clinical mountains and I am eternally grateful. Together we will Cure FA!

 

Emily

 

Old friends, new friends, doctor friends, and families made the evening one certainly to remember and cherish. So many danced the night away with their “ability” to let loose and enjoy the moment. It was a magnificent celebration of life, support for a cause, and a promise of a cure!

The FARA Energy Ball brings loyal supporters of FARA together for three days in downtown Tampa, FL each year and I had the wonderful privilege of attending.

We got the weekend started with the ‘University of South Florida/FARA Scientific Symposium on the evening of Thursday, September 4th. Every year, FARA invites some of the top scientific researchers in the world to talk about their research and what they are doing to come closer to a treatment and cure for FA. This year, the symposium featured Dr. Sanjay Bidichandani (who spoke about his research in the field of epigenetics), Dr. Joel Gottesfeld, Dr. Massimo Pandolfo, and Dr. Helene Puccio (who spoke to the advances in gene therapy as a possible treatment for FA).

The symposium also featured two patient panels. The first panel involved Emily Young and myself. We talked about living with FA and how we go about fighting this disease each and every day. The second panel involved Kyle Bryant and Chez Hanson, who spoke to their involvement in various FA drug trials. You can watch the full symposium here.

Saturday, September 6th was the day we were all waiting for, as the Energy Ball kicked off at 5:30pm. Everyone came dressed in cocktail attire ready to have a great night full of fun and raise funds to find a treatment and cure for FA. The event featured hundreds of silent auction items and a number of live auction items that went for as much as $40,000 an item! We were spoiled with a delicious steak meal and danced the night away to the live band.

This year’s FARA Energy Ball was an amazing experience and I cannot wait to come back next year to be reunited with my FAmily! The 2014 FARA Energy Ball grossed over $1.8 Million and we hope to surpass this amount in the years to come. Together we will cure FA!

 

 

Don’t worry if you weren’t able to attend the USF Symposium. Watch online by following this link: www.ustream.tv/channel/curefa

Christina

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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