- September 26, 2024
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When a person falls seriously ill, it’s not uncommon for their community of family, friends and co-workers to surround them and make sure they’re taken care of.
This was how the story began for Will Wellman, a Tampa native who was diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a disease of the kidney, in 2008. More than 15 years later, what started small is now a multi-state fundraising machine, where some top Tampa area executives, in real estate and construction, among other fields, play active and key roles.
It all started when two pals of Wellman's friend group — most of whom grew up together in Tampa — were trash-talking each other's barbecuing skills. That's when it was decided: a bet would settle the debate once and for all with a ‘smoke off’ that would serve as a fundraiser for Nephcure, a nonprofit organization that focuses on FSGS and Nephrotic Syndrome research and cures.
“I don't think any of us could have imagined what it would become,” says Wellman, who was a student at Princeton Theological Seminary and traveled from New Jersey for the first event in 2011. He is now an ordained minister in the presbyterian church and living in Nashville.
That debut backyard barbecue at Vince Chillura’s house was a success, with 100 or so people in attendance and several thousand dollars raised. (Vince Chillura's father Joe Chillura Jr. was a prominent Tampa architect and two-term Hillsborough County commissioner. Vince's brother, Joe, founded Clearwater-based USAmeribank which Valley Bank acquired in 2018.)
No one could’ve predicted that this seminal cookout would eventually grow into the Pig Jig, an annual event now backed by the HopeWill Foundation, with 10,000 people in attendance raising $9 million dollars since its inception. (HopeWill had $2.2 million in gross receipts in the most recent fiscal year, according to public tax filings; its board includes Tampa marketing and logistics entrepreneur Chris Whitney and Trevor Baldwin, CEO of the Baldwin Group, one of the largest insurance companies in Florida with $1.2 billion in revenue last year.)
“It's one of those things that when you put together a lot of people that are passionate about various elements of it, it just grows,” says Chris LaFace, who befriended Will after college and serves on the board of the HopeWill Foundation while also working as CEO and president of RIPA and Associates, a construction company headquartered in Tampa. RIPA had $493 million in revenue in 2023.
Currently there is no cure for FSGS, but there has been progress over the years.
“When we started the event, there were no drugs in any phase of clinical trials for this particular disease,” says Ryan Reynolds, who serves as vice president of the foundation in addition to his role as executive vice president of CBRE, a Dallas-based real estate investment firm with an office in Tampa, “And now the exact number, I'm not sure, but I believe there's over 40 drugs in various phases of the clinical trials that the money that we raise has gone directly to to helping fund those research studies for those particular medicines.”
For Will, the journey has been arduous. “I went through a ton of different drugs, steroids, chemotherapies, immunosuppressants, and, long story short, none of them worked,” Wellman says, “And so in 18 months from diagnosis, I had kidney failure. And so I was 26 at the time that I started dialysis.”
He is on dialysis for five-hour sessions three times a week and has been for 14 years.
He even went through a kidney transplant when his mother donated her kidney in 2010. Unfortunately the disease overtook the transplanted kidney as well and it had to be removed when it was found that the disease was even more aggressive to the new kidney than the native one.
While the gang continues to be blown away by the success of the event, the goal is to keep growing and outdoing themselves each year. “The dream is to find (and) fund a cure for FSGS. That is why we set out on this mission. And so I don't think that we will be satisfied until that happens,” says Reynolds.
There are even Pig Jigs in multiple cities now. Part of the foundation’s work involves patient socials — events connecting families navigating different kidney diseases. “Several of those families have gone back to their respective markets and homes and said, ‘Hey, we would love to kind of start a pig jig here as well,’” Reynolds says, “So we are involved in the ramp up. We try to help them as much as we possibly can in terms of how we've done it and getting organized.”
Although no one remembers who of the three teams that first night back in 2011 won the contest, it is fondly recalled that Vince Chillura lost the contest on his home turf. As it goes with longtime friends, unprompted puns abound. “We always rib Vince about this,” says Wellman.
“He got smoked,” adds Reynolds.
