TAMPA — The last time Tampa held a Pig Jig, it was a sold-out event with 12,000 people packed in to see Grammy winner Darius Rucker perform as more than 65 barbecue teams competed.
Will Wellman, 39, stepped aside with tears in his eyes as the smoking meats perfumed Julian B. Lane Riverfront Park. He took a moment to absorb the miracle his childhood friends had created. It started as an unlikely band of 20-something guys who had a backyard barbecue contest. It has grown into one of the area’s biggest events — and the single largest donor for research in the history of the rare kidney disease that Wellman has.
When the event started in 2011, there were few treatments and no cure for Wellman’s kidney disease. Now there are nearly 60 clinical trials, largely funded by NephCure Kidney International, whose largest annual donor is the Tampa Pig Jig. The event has raised more than $7 million in the past decade for rare kidney diseases that affect fewer than 200,000 Americans and therefore get little attention from drug companies.
There are plenty of fundraisers, concerts and events in the Tampa Bay area, but this one has grown in just a decade to become one of the biggest, with A-list headliners and top barbecue chefs to spotlight a rare disorder that now has dozens of potential treatments. Three other cities across the country have adopted the Tampa Pig Jig as their model for raising money for the same cause.
The event returns Oct. 22 with nearly 70 barbecue teams competing and multiplatinum-selling country artist Sam Hunt headlining at Julian B. Lane Riverfront Park in Tampa.
The head of the kidney research foundation said other than the AIDS epidemic, he has never seen a rare disease get so much funding and attention and treatments in such a short time.
“I’ve spent 34 years in the pharmaceutical industry and I’ve never seen anything like this,” said Josh Tarnoff, CEO of NephCure. “To have a rare disease where you can find treatments and this much activity, I don’t think there is a precedent, other than AIDS, that I can think of. So go Tampa.”
Wellman had just turned 25 and completed his undergraduate degree in horticulture. He had done internships with the Audubon Society and the National Park Service. Not feeling well, he was alarmed to find he had gained 18 pounds in just three days.
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In 2008, Wellman was diagnosed with focal segmental glomerulosclerosis, also known as FSGS. High protein levels in his urine from the disease resulted in swollen body parts, water weight and low energy. It led to kidney failure, a transplant that failed and a lifetime of dialysis.
Meanwhile, some buddies from South Tampa decided to throw a party for a cause.
Wellman’s friends Chris Whitney, Ryan Reynolds, Wes Tolbert, Vince Chillura, Charles Davis and Trevor Baldwin were all in their mid-20s, just out of college and starting their careers in real estate, construction, insurance and banking. The gang loved college football, live music, barbecue and trash talk, and they decided this could be a recipe for a fundraiser. As the event grew they formed a nonprofit, and school friend Chris LaFace joined the mix.
“These dudes in their backyard had a barbecue competition and it’s a brilliant idea,” Tarnoff said. “What is the great unifier across America today? No matter what your demographic or politics, it’s barbecue. This is how we bring America together.”
The first Pig Jig was held in the backyard of Chillura, son of former Hillsborough County Commissioner Joe Chillura. It was so much fun (especially the smack talk they gave Chillura for his terrible ribs) that they did it again and kept expanding each year, first to the Armature Works property owned by another South Tampa friend, then to Curtis Hixon Park and its current home at Julian B. Lane Riverfront Park.
None of these guys had experience in event planning or food or charitable fundraising. As Pig Jig grew, they turned to professional event planners. But the original crew still oversees elements of the event and the men have become advocates.
All the guys round up the barbecue teams. Two of the founders are now on the national board for NephCure, an organization devoted to finding a cure for nephrotic syndrome. And they all say the experience has been transformative.
“Pig Jig has changed my life,” said Whitney, 38, head of Whitney Logistics, a transportation and consulting company, who met Wellman in elementary school and Jesuit High School and now serves on NephCure’s board. “This helped bring me closer to a great group of friends and helped instill an element of service to the community that I learned first at Jesuit and now practice. But it’s also a testament to how many people care about Will.”
Wellman abandoned a career in forestry and went to seminary and eventually became an associate minister at a South Tampa church.
“When I got sick I was confronted with my mortality so I just started asking a lot of questions,” Wellman said. “I guess I don’t take life for granted, so I want to do things that mean something and aren’t trivial.”
Chillura, 39, executive vice president for Valley National Bank, said he wasn’t surprised his lifelong friend went into a life of service.
“If you met Will you would never know he spends 10 hours a day in dialysis because he’s such a positive individual and he doesn’t complain. He’s always concerned about the other person, asking questions and checking in,” Chillura said. “He has every right to be concerned about his own well-being but his mentality is a life of service versus poor me, pity me.”
Though FSGS is rare, the same therapies used to treat it will open the door to a wider range of treatments for kidney disorders, said Tarnoff, the head of the kidney foundation. One in seven Americans will suffer from chronic kidney disease.
FSGS patients have benefited from Pig Jig’s profile, Tarnoff said. There are more than 12,000 doctors who are kidney specialists, but only about 300 are specialists in this disease. The average doctor doesn’t see this disease often enough to recognize it, so patients often go undiagnosed.
There were two people at last year’s Tampa Pig Jig who found out they had it because of the event and were paired with doctors to help them, Tarnoff said.
“So you guys are saving kidneys and saving lives,” Tarnoff said. “If we can find them early enough in their diagnosis then the odds are dramatically improved in keeping their kidney.”
If you go
Tampa Pig Jig: Nearly 70 barbecue teams will be competing Oct. 22. Multiplatinum-selling country artist Sam Hunt headlines at 8:15 p.m. with Kip Moore, X Ambassadors and Bahamas opening. The gates open at 1 p.m. with fireworks at 9:45 at Julian B. Lane Riverfront Park, 1001 N Boulevard, Tampa. Tickets start at $75 at tampapigjig.com. A new VIP option, called the Watering Hole, offers an exclusive shaded tent area for $175 that includes four drinks, a meal of choice from the event’s vendors, private bathrooms and tent access.