The power of partnership: how a company outing became a million-dollar childhood cancer fundraiser
Annual Jakefest events support next-generation childhood cancer research
CureSearch for Children’s Cancer works every day to bring children with cancer to the forefront of drug development. Through a unique funding model, CureSearch is driving innovative research that’s on the path to quickly becoming a new treatment option for the more than 17,000 children diagnosed with cancer each year. In fact, projects funded through the CureSearch Acceleration Initiative are five times more likely than average to advance into clinical trials and reach the clinic more than two years faster. That speed is critical for families facing cancers with the lowest survival rates and fewest treatment options.
These impactful results are only possible with the ongoing support of generous donors, volunteers, fundraisers and partners – like the Koenigs family and Kiewit Corporation.
Golfing for a Cause
For 15 years, golfers across the country have participated in Jakefest, a series of annual golf tournaments established by Harry and Robin Koenigs in memory of their son, Jake. At five years old, Jake was diagnosed with rhabdomyosarcoma, the most common soft tissue sarcoma in children. He passed away in December of 2006, just one month before his ninth birthday.
“When we realized that Jake wasn’t going to survive, we wanted to find a way to give back to an organization that was working towards finding a cure,” said Harry. “We knew that CureSearch was that organization.”
The Koenigs family knew that more research was needed to ensure that other children with rhabdomyosarcoma and other hard-to-treat cancers received the best care possible. They also wanted to raise awareness for childhood cancer. In doing so, Harry’s employer, Kiewit, turned their annual employee golf outing into a fundraising event called Jakefest.
Kiewit, one of North America’s largest construction and engineering organizations, sponsors the event every year.
“We asked Jake’s doctor, a nationally renowned pediatric oncologist, who she would choose to be the recipient of these funds. She said CureSearch without a doubt!” said Robin Koenigs. “We started out the summer of 2007 with two Jakefest tournaments and now, we host eight every year. Our total raised to date is $5 million dollars! I don’t have the words to express how amazing that is to us.”
“Families like the Koenigs play a vital role in funding childhood cancer research, which is so desperately needed,” said Hank Adams, executive vice president of Kiewit Infrastructure Group and CureSearch board member. “Kiewit is proud to sponsor Jakefest and greatly appreciates the continued support from our employees and event attendees for making a tremendous impact on the families we serve.”
Daisy Roque is the lead organizer for Great Lakes Jakefest and also helped launch the Omaha event. She says it’s remarkable seeing the research advances being made year after year by CureSearch-funded projects.
“Jakefest is rewarding in the sense that we are the voice for those that can’t be heard,” said Roque. “Helping to fund research to cure childhood cancer is priceless. There are plenty of laughs, smiles and tears during Jakefest but seeing everyone from different paths come together to support this cause is overwhelming.”
Despite decades of study, the standard of care for rhabdomyosarcoma remains a chemotherapy regimen developed in the 1970s. Associated toxicities include bone marrow suppression, infection, liver damage, cardiotoxicity and decreased kidney function. Long-term survival for high-risk rhabdomyosarcoma has remained less than 30% for more than 40 years.
“The same cancer in an adult does not present itself the same way in a child,” said Robin. “The side effects, secondary cancers and lifelong illnesses that are products of these treatments are nothing short of barbaric. That’s why this event is so important and impactful for so many kids and their families.”
Advancing Childhood Cancer Research
Jakefest has raised millions of dollars for groundbreaking childhood cancer research projects conducted by CureSearch-funded investigators, many of which have already made a significant impact.
Supported by funds raised through Jakefest events, Dr. Mary Beckerle of the Huntsman Cancer Institute began developing a new treatment approach for Ewing sarcoma. The project demonstrated so much potential for its anti-tumor effects that it was licensed to Salarius Pharmaceuticals, which is conducting a phase 1 trial in Ewing sarcoma.
Dr. Jason Yustein of Baylor College of Medicine began a project in 2013 to explore the genetic changes that occur when cancer spreads. He studied mice with rhabdomyosarcoma in order to track the development of the cancer, and identified the genes responsible for the disease’s progression and metastasis. Dr. Yustein has found new promising targets for treatment of high-risk rhabdomyosarcoma and is using his models to move the new targeted therapies into preclinical testing.
Dr. Ranjit Bindra of Yale University tested a novel drug in pediatric patients with a specific subtype of glioma that makes it sensitive to chemotherapy by inhibiting the PARP gene that is involved in repairing DNA mutations. The clinical trial is now active at the University of California San Francisco, the Dana-Farber Cancer Institute, Washington University St. Louis, Johns Hopkins University, Oregon Health & Sciences University, St. Jude Children’s Hospital and Yale University.
In 2022, Jakefest events will support newly-funded CureSearch Acceleration Initiative projects, which are developing new therapies for pediatric high-grade glioma, rhabdomyosarcoma and diffuse intrinsic pontine glioma (DIPG).
Click here to learn more about the impact of other Jakefest-supported projects.
