At one time, he led a restaurant company with more than 96,000 employees and nearly 1,500 locations. But when he wasn’t working to grow Outback Steakhouse and other restaurants that were part of Bloomin’ Brands Inc., Paul Avery’s focus was on his family.
In particular, his daughters, who both suffer from a rare nerve degenerative disease called Friedreich’s ataxia.
“Before we knew what they had, I never heard of Friedreich’s ataxia,” Avery said. “I didn’t even know how to pronounce it. Like many people in life, you hear of these types of diseases and challenges, and it happens to somebody else. It hit home for us with both of our kids.”
Avery, who is now president and chief executive of the World of Beer chain, is sharing the story of his daughters ahead of this weekend’s Ace for a Cure tennis fundraiser hosted by Avila Golf & Country Club. It will feature Avila resident John Isner, the top-ranked male tennis player in the United States, and No. 14 in the world.
Isner, who grew up in North Carolina, has been friends with Avery and his family since he first started to attend fundraisers benefiting Friedreich’s Ataxia Research Alliance in Tampa. And he has seen firsthand what the condition can do.
“The Averys are the absolutely nicest people, and they’ve worked really hard to conquer this disease,” Isner said. “Before I met them, I didn’t even know about Friedreich’s ataxia at all. But I’ve really gotten to know the ins and outs, and Paul and (wife) Suzanne are right on top of it.”
Only 6,000 people in America have been diagnosed with the condition, but 1 in 100 people are carriers of the gene that can cause it, Avery said. The disease itself typically attacks the spinal cord, especially those nerves that direct muscle movement in the arms and legs.
It can lead to muscle weakness, vision and hearing impairment, spine curvature, diabetes and heart problems.
While pharmaceutical companies and research centers have been working on treatments and a cure for Friedreich’s ataxia because of how it relates to other diseases like Huntington’s and Parkinson’s diseases, there is still a long way to go.
“Today, we have several drugs that are in advanced clinical trials,” Avery said. “They are showing to be very promising, so we’re excited about that. And the awareness of the condition continues to grow.”
While the tennis event itself is on Sunday, the entire weekend actually kicks off Nov. 21 with a meet and greet and autograph session with Isner. Saturday, beginning at 8 a.m., Avila tennis director Roger Cypriano and his team will conduct a tennis Teach-A-Thon with half-hour lessons available for $25.
The Spin-A-Thon begins at 9 a.m. with one-hour spin classes starting at $50, and additional hours at $25. The Mind Body-A-Thon begins at 11 a.m. with Pilates and yoga.
Tennis round robin takes place from 3 p.m. to 5 p.m., for sponsors who spend $1,000 or more.
Sunday is the tennis exhibition match featuring Isner, where gates open at 11:30 a.m. at Avila. Tickets to that match, which includes lunch, are $80 each.
“I’ve always had a good time playing, and it’s convenient for me, because it’s all right here in the neighborhood,” Isner said. “And it’s for a great cause, and I’m glad that I can really help out.”
Avery’s daughters are looking forward to some of the treatments for Friedreich’s ataxia making their way through clinical trials. In the meantime, however, they’re living normal lives. One is in college, and the other is finishing her senior year of high school.
“They’re super kids in their attitudes and expectations, and they have a great outlook,” Avery said. “They’re not defined by the disease, and just want to get ahead in life like everyone else.”
To purchase tickets or sponsorships, visit tinyurl.com/AceCure. For more information on the event, call Roger Cypriano at (813) 968-6792, or email him at .
If you go
WHAT: Ace for a Cure tennis fundraiser featuring John Isner
WHO: Friedreich’s Ataxia Research Alliance
WHEN: Nov. 24, 11:30 a.m.
WHERE: Avila Golf & Country Club, 943 Guisando De Avila, Tampa
COST: $80
INFO: tinyurl.com/AceCure
