For 144 golfers gathered on a Dublin course under a bright blue sky, Aug. 24 was the perfect day for the Andelyn Foundation’s annual Fore One Purpose golf tournament and fundraising event.
For the O'Sullivan family, it was a day nearly 10 years in the making that would mark a turning point for them.
Three life-altering letters
South Carolina spouses Tarah and Eric O'Sullivan are parents to five children. Their youngest two, Drake, age 9, and Vivian, age 7, both live with nonketotic hyperglycinemia (NKH). The rare genetic disorder prevents their bodies from processing the amino acid glycine. When toxic levels of glycine build up in the brain and tissues, it can cause neurological
issues, severe seizures, coma and even death.
The prognosis is bleak for patients with NKH. Four out of five infants with the disorder don’t make it to their first birthday. Drake and Vivian beat those odds, but the nearly decade-long journey hasn’t been an easy one for the O’Sullivans.
“I've watched [Drake] have seizures and break his bones,” Eric said in an emotional address to the Fore One Purpose attendees. “I watched his heart stop for almost 40 minutes. I was sitting beside him and could touch him, and his heart stopped. For 40 minutes. God's grace, he's still with us, and he's doing good.”
From the very beginning, medical professionals repeatedly told the O’Sullivans hope for a cure for Drake and Vivian was futile. But Eric and Tarah decided to keep fighting, conducting their own research and consulting with experts.
When they discovered gene therapy could hold the key, the family launched the Drake Rayden Foundation, raising their own funds to pay for the potentially life-saving gene therapy treatments their children needed.
Then they discovered Andelyn Biosciences.
A foundation for hope
The Columbus-based organization develops and produces innovative gene therapies, which are clinical treatments for genetic disorders that work by silencing, altering or replacing disease-causing genes with properly functioning copies.
Originally established at Nationwide Children’s Hospital, Andelyn Biosciences became an independent contract development and manufacturing company in 2020.
The company’s work has helped pave the way for groundbreaking gene therapy treatments, and to bring that work out of the lab and into the community, the Andelyn Foundation was soon formed.
For the third consecutive year, the Andelyn Foundation held its Fore One Purpose Golf Tournament on Aug. 24 at The Country Club at Muirfield Village in Dublin. The event was designed to raise awareness and funds for one patient and their family navigating a rare disease each year. Through the previous two tournaments, the foundation gifted a total of $100,000 to two young patients and their families battling different rare diseases.
Wade Macedone, CEO of Andelyn Biosciences and Andelyn Foundation board member, said, “We usually do an end-of-year wrap-up, and the No. 1 thing that always bubbles to the best thing in the year is Fore One Purpose, when we're able to get a child a dose and give them a chance. It's just an amazing feeling. It keeps us going.”
Drake and Vivian O’Sullivan were selected as the 2026 recipients, or “Impact Champions,” for the Fore One Purpose event, helping their family secure the funds needed for their gene therapy drug trial.
“End of this year, our goal is that this trial happens and Drake and Viv will be the first two children within NKH in the world to receive this drug,” Tarah said.
Because of the children’s specific gene mutation, Tarah said, if the drug works for them, that means it will also work for 85% of the NKH population. “So, the ripple effect from that is huge.”
The next chapter
Drake and Vivian are very communicative kids, Tarah said, but they are both nonverbal because of NKH.
“I cannot wait until they can be able to tell their own story,” she said. “I believe that with all my heart. Right now, it's our story to tell, but one day, it will be theirs.”
As for the Andelyn Foundation, after three years of successful Fore One Purpose fundraising events, Macedone hopes to see the organization grow into its own entity to help families beyond the golf tournament via clinical trials and education.
“We have all of that infrastructure in central Ohio between the hospitals that are here and the research institutes,” he said. “So, my vision is much larger than Fore One Purpose.”
Reporter Kelly Tucker can be reached at ktucker@dispatch.com.
This article was made possible by support from the Center for HumanKindness at The Columbus Foundation, which has partnered with The Columbus Dispatch to profile those making our community a better place. Help us lift up inspiring stories of kindness by suggesting people, initiatives, or organizations to feature by emailing kindness@dispatch.com. The Dispatch retains full editorial independence for all content. Learn more at Dispatch.com/Kindness.
This article originally appeared on The Columbus Dispatch: Fore One Purpose connects community to rare disease fight
