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FARAFARA Cure FA

2015 USF Health Scientific Symposium and FARA Energy Ball

2015SEB1Every year, part of the FAmily migrates down to Tampa, Florida for the FARA Symposium and Energy Ball. 2015 was no different! We had a record number of pre-registrations (300+) for the symposium and a great turn out.

The symposium kicked off with a warm welcome to the University of South Florida (USF) by Dr. Clifton Gooch, director of USF Neuroscience Collaborative, Neurology, College of Medicine, and USF President, Judy Genshaft. They updated everyone on how dedicated the university is to finding a cure for FA (we love you, USF! Go Bulls!).

FARA Executive Director, Jen Farmer, and FARA President, Ron Bartek, gave an update on all things FARA. They spoke about the progress in FA research worldwide. Very exciting! They reiterated the value of the organization’s 2,600-member patient registry in bringing together all its stakeholders, encouraging the FA community to get involved in completing the registry. 

 

2015SEB3We then heard from a couple doctors working towards a cure, including Dr. Theresa Zesiwicz and Dr. Sanjay Bidichandani. Dr. Bidichandani led, for the first time in symposium history, a panel discussion with several pharmaceutical industry leaders regarding preclinical and clinical studies. The panelists included Jeffrey Sherman, MD, Executive Vice President for Research and Development and Chief Medical Officer, Horizon Pharma; Jodi Cook, PhD, Vice President of Operations, Agilis Biotherapeutics; Colin Myer, MD, Chief Medical Officer, Reata Pharmaceuticals; and Robert De Jager, MD, Chief Medical Officer, Retrotope.

The scientific panel was followed by a patient panel in which four FA patients discussed life with FA. We had Jade Perry, Erin O’Neil, Kendall Harvey and Chris Nercesian. Dr. Gooch wrapped up the symposium by highlighting the tremendous progress made in the research and development of lead drug candidates for FA. “When pharma becomes engaged, that means the research is good enough to put smart money behind the disease to get a drug to market,” Dr. Gooch said. “There is more than just a glimmer of hope. We’re on the cusp of great possibilities… We look forward to the day when Friedreich’s ataxia will become a historical footnote like smallpox.”

2015SEB2As if the symposium wasn’t big and exciting enough – we still had a ball to go to!

The Energy ball is hosted annually in Tampa. And the name Energy Ball is extremely fitting – the atmosphere at the event is invigorating and contagious. It’s like a giant FARA pep rally that will you leave feeling hopeful about the future as we push to Cure FA! Oh, and we happened to raise over (gross) $2 million dollars(!!!!!)

The night was full of fun and emotional moments. Wendy Ryan of the Tampa ABC Action News Team emcee’d the evening and did a phenomenal job. She has been a big supporter of FARA through the Avery family and we are grateful for her friendship.

2015SEB4Tod Leiweke, 5 year Energy Ball Honorary Chair and newly appointed COO of the National Football League, also attended the Ball. In addition to their incredible support of the event, Tod and his wife Tara added amazing trips to the live auction such as an exclusive NFL Experience, Fly with Away with the Tampa Bay Lightning, and a trip to New York to see Billy Joel Live at Madison Square Garden.

The evening kicked off with cocktails and a silent auction. A few more of the items up for bid included trips to Alaska, the Adirondacks, Hawaii, Telluride, and Montana (plus many more!). And if traveling isn’t your thing, there were plenty of other options! Four-course dinners at Carrabas, jewelry, cooking classes, boots, wine and more! In my opinion, the most exciting auction item was a tiny, adorable Havanese puppy!

2015SEB5We then enjoyed a wonderful steak dinner and entertainment by Air Force Tech. Sgt. Sonya Bryson and Southern Train. We danced the night away and celebrated all that FARA has accomplished thus far, as well as all that we are striving to accomplish.

As Suzanne Avery put it, “I refuse to call this the 7th Annual Energy Ball because I am looking forward to the day when we cure FA, at which point we will throw a huge retirement party!” We all look forward to celebrating that day with you!

To watch a recording of the symposium, click HERE.  
To watch a video that aired during the energy ball, click HERE
To join the patient registry, click HERE
To view the research pipeline, click HERE. 

Scientific Symposium pictures courtesy of Eric Younghans, USF Health Communications and Marketing.
View more pictures of the 2015 FARA Energy Ball HERE courtesy of Kent Ross Studios. 

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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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