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
.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.
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.
“The one thing that we believe is nobody needs to walk alone in a rare therapy space or a gene therapy space,” Macedone said. “The money's great, but we really set out to give families and patients a platform to scream from a mountaintop.”
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.
“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.”
Registration to participate as a golfer in the Fore One Purpose tournament is full, but there are still sponsorship opportunities available at fore-one-purpose.perfectgolfevent.com.
Unable to attend the big day? You can still visit the site to donate or purchase merchandise in support of the O'Sullivan family.
For Macedone, the most vital aspect of Fore One Purpose is the opportunity to raise awareness of these rare diseases and the families facing them every day.
“There's always a chance, right? Even in the darkest days, there's opportunity,” Macedone said. “And there's an entire network of people that are working on rare disease from the government down to the family members that may be your neighbors.”
Reporter Kelly Tucker can be reached at ktucker@dispatch.com.
This article originally appeared on The Columbus Dispatch: Fore One Purpose returns to help family battling rare disease
