Jason had first been diagnosed in 2003 and went into remission. But the cancer returned a year and a half later, necessitating a stem cell and bone marrow transplant. As a carrier of the Epstein-Barr virus (EBV) — an incredibly common virus that more than 90% of adults have — Jason developed a rare post-transplant complication that his suppressed immune system could not handle. He was 36 years old when he died, leaving behind his family and a class of adoring fifth graders.
The knick-knacks Sandy keeps in “Jason’s Garden” represent his zest for life: flags for the Chicago Cubs and his alma mater of Northern Illinois University, various Arkansas Razorbacks memorabilia and one remaining Three Stooges ornament that hasn’t yet been carried away by squirrels.
As she watches the wrens that have made a home in the birdhouse, the intrepid Sandy remembers her nature-loving son — and how she’s spent the past 11 years fundraising to make sure no one else loses a child because of EBV complications. “I’m one of those people who can’t just sit back,” says Sandy. “If you can make a difference, why not?”
Betting on Ohio State
Jason Gould never set foot in the OSUCCC – James; he’d received his cancer treatments and transplant in his home state of Illinois. And most of the people who attend the annual “Hogfan” party hosted in his memory, hosted by the Friends of Jason Gould, a 501 (c)(3) non-profit organization set up by Sandy, weren’t initially familiar with Ohio State’s academic cancer center.
But when it came time to determine the best place to invest the philanthropic dollars they’d worked so hard to raise, Sandy wanted the funding to go where it would have the best shot at defeating EBV. After hours of research on Google, she discovered the groundbreaking work on EBV happening at the OSUCCC – James.
She reached out to former OSUCCC – James CEO Michael Caligiuri, MD, who introduced her to Robert Baiocchi, MD, PhD. “We immediately brought the Gould family here,” recalls Dr. Baiocchi, who travels to Illinois each year to attend and speak at the Hogfan fundraiser. “It’s a very personal connection, when you think about what this family has gone through. Their loss is just monumental, and yet they’re completely all in. They ‘get it,’ understanding that research for problems like this is critical and that any contribution is significant.”
Indeed, Sandy’s decision to invest in Dr. Baiocchi’s research — to the tune of nearly $300,000 over the past 11 years — is paying off. “Lo and behold,” says Sandy, “not only have they gotten a vaccine for Epstein-Barr into clinical trial, but they’ve now found a pharmaceutical company to synthesize the drug and make the trial a reality. We were elated last year on our tenth anniversary of fundraising. We accomplished the main goal we had sought to achieve, and in addition, Dr. Baiocchi and his team have developed treatment drugs and things that will help identify the Epstein-Barr virus in early stages so there will be more preventive capabilities in the future. It’s really gratifying.”
This progress couldn’t have come about without donor investment. “Personal donors like Friends of Jason Gould have been instrumental in allowing us to pull studies together, publish papers, take steps to show the drug development community and the FDA that this is worth pursuing,” says Dr. Baiocchi. “If we open a trial and get positive data, that allows us to apply for National Institutes of Health funding and to move forward with a phase II trial that hopefully would work toward FDA approval to prevent EBV-driven cancers in patients awaiting transplantation. The impact of philanthropy is really tremendous.”
The Epstein-Barr Virus and Cancer
More than 90% of adults have EBV, which is easily controlled by normal immune systems. But in patients with suppressed immune systems — like Jason Gould, who was treated with immune suppressive drugs to prevent graft-versus-host disease following his stem cell and bone marrow transplant — EBV can cause cancers. “It’s a real problem,” says Dr. Baiocchi, who notes that in Jason’s case, “The drugs that prevented his body from being attacked by the transplanted immune system also prevented this immune system from fighting off the virus, which caused a dangerous lymphoma that took his life.”
What is Ohio State doing to help save lives for cancer patients with EBV? “Many years ago, Dr. Caligiuri and I discovered which targets our immune system ‘sees’ when it fights Epstein-Barr,” says Dr. Baiocchi, who along with Dr. Caligiuri used those findings to create a vaccine that will soon move into a clinical trial. “We’re going to test it in healthy people, for starters, and then once we get the safety profile, we’ll test it in patients who are awaiting solid organ transplants to boost immunity to the virus so they’re protected. Beyond assessing safety, the trial will tell us how effective the vaccine is at driving protective immunity.”