Fore One Purpose returns to help family battling rare disease_Author: Kelly Tucker_Columbus Dispatch News
(Exerts below are from articles published at Columbus Dispatch https://www.dispatch.com/story/lifestyle/kindness/2026/09/13/rare-disease-trial-gets-boost-from-golf-tournament-one-purpose/91155946007/ and https://www.dispatch.com/story/entertainment/events/2026/08/22/fore-one-purpose-offers-hope-family-navigating-rare-disease/91332815007/ Please see articles above for the full reading and images.)
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 third consecutive year, the Andelyn Foundation will bring its Fore One Purpose golf tournament to Dublin on Aug. 24 at The Country Club at Muirfield Village. 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, Macedone said the foundation has gifted a total of $100,000 to patients.
If Wade Macedone has learned anything working in gene therapy research, it’s that parents of children with rare and complex diseases are truly an unstoppable force.
“There's nothing more moving in this entire industry than having a family or an angry mother or an angry father trying to figure out a path forward for their kid,” said Macedone, CEO of Andelyn Biosciences and board member of the Andelyn Foundation.
This year, the tournament will support Drake and Vivian O'Sullivan, siblings ages 9 and 7, respectively, who live with nonketotic hyperglycinemia (NKH). Four out of five babies with the rare metabolic disorder don’t live to one year, but the O'Sullivans have beat the odds and continue to fight as a family.
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 disorderprevents 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.
“They’ve been raising money for a long time,” Macedone said. “We just want to give them a chance to amplify… a chance to dose their kids, [and to] to give them a shot.”
Andelyn Biosciences is a Columbus-based gene therapy contract development and manufacturing organization dedicated to developing and producing innovative gene therapies. The Andelyn Biosciences team created the Andelyn Foundation to bring that work out of the lab and into the community.
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.”
(All Images by Adam Cairns/Columbus Dispatch to view original link follow here: https://www.dispatch.com/picture-gallery/lifestyle/kindness/2026/09/13/for-one-purpose-provides-funding-for-rare-disease-treatment/91477139007/)