By JENNA MANTO
Laurel Avery, a junior marketing major at UT, is one in 50,000 Americans to battle with the rare neuromuscular disease, Friedreich’s ataxia, which, according to the Friedreich’s Ataxia Research Alliance (FARA) is a “debilitating, life-shortening, degenerative neuro-muscular disorder.”
Last Saturday, Sept. 17, the FARA Energy Ball, started by Avery’s parents, held its eighth annual event at the Tampa Marriott Waterside Hotel & Marina to benefit FARA and the University of South Florida Ataxia Research Center. This main event was preceded by a symposium at USF on Thursday called Understanding Energy for a Cure, and a Patron Party for Gold sponsors, including USF Health and Chondrial Therapeutics, LLC, on Friday.
The Energy Ball consisted of a cocktail reception and silent auction followed by a seated dinner and live auction, and ended with live entertainment by the Blonde Ambition Band. The auctions consisted of myriad items including getaways to Hawaii and Mexico, signed jerseys from the Tampa Bay Lightning and other sports teams, tickets to the final round of The 81st Masters, as well as a silver labrador puppy named Abby.
Among the roughly 800 guests attending this event, including employees from J.P Morgan and The Tampa Bay Times, was Avery. As someone who was diagnosed with the rare disease at eight-years-old, Avery is dedicated and invested in the event and foundation.
“FARA is blessed to have a large network of supporters from all around the world,” Avery said.
Attendees of the Energy Ball were friends and family of those with the disease, as well as those who have FA, and other members of the community.
“I always look forward to this event every year,” Avery said. “We are so grateful to have so many generous supporters in our journey to find a cure.”
Her parents, Suzanne and Paul Avery, are not only the ones who began the Energy Ball, but they are on the FARA Board of Directors and have created The Avery Family Foundation in support of FARA.
Other family foundations and organizations sponsor the event as well including the Lightning Foundation, Tampa General Hospital, Franklin and Barbara Carson Family Foundation, The Krutzer Family, and many more.
Francis DeRosa, program director for fundraising and communications, has been working with FARA for nine years, communicating information to stakeholders and working with the fundraising aspect of FARA. According to DeRosa, the FARA Energy Ball is the biggest fundraising event for the organization. Along with this event, FARA raises money through an annual bike ride called Race Across America, as well as other smaller fundraising events hosted by families across the country. All together, DeRosa said that the fundraising efforts raise about one million dollars annually for FARA.
When talking about the most rewarding part of her job, DeRosa confidently said that it is helping the families with Friedreich’s ataxia.
“It’s not something a family anticipates,” DeRosa said. “I’ve seen people time and again rise to the occasion, doing what they can to make the change, whether it’s fundraising or they’re participating in trials.”
DeRosa also mentioned that she sees “so much strength and so much perseverance” in these families.
One volunteer at the event, pediatric occupational therapist Andrea Shutz, speaks from personal experience with Friedreich’s ataxia as she has a couple of children with the disease in her family.
“The purpose is to keep people independent,” Schutz said.
Schutz volunteers at the Energy Ball because, as she adamantly said, “I want to kick its ass.”
Another volunteer at the ball was pediatric physical therapist Jodi Kraynak, a co-worker of Shutz who relayed the same sentiments about the disease and finding a cure.
“I want to help and I want to be a part of the solution, whether it’s directly working with a kid who has FA or working in this capacity within the FA community to help those affected,” Kraynak said.
Jenna Manto can be reached at email@example.com