For the past 20 years, Kathy Zillman-Ogden and other volunteers have transformed a golf tournament into a beacon of hope for children battling cancer and their families.
Tee Up for Tots Charity Golf Tournament — now under the nonprofit Courtney’s Courage — has become synonymous with both assistance for families dealing with childhood cancers and for pediatric cancer research.
“I can honestly say that the first year of the tournament, it was designed to be ‘one and done’ — we thought it would be a one time event. It is very exciting and humbling to be here now preparing for our 20th event,” said Zillman-Ogden, who launched the nonprofit with family members and friends after losing her 4-year-old daughter, Courtney Zillman, to neuroblastoma. “Without the generosity of the Tucson community and our tournament sponsors and golfers, we wouldn’t be where we are today.”
To date, Courtney’s Courage has funneled more than $740,000 into pediatric cancer research at UA Steele Children’s Research Center.
“After our very first tournament we helped purchase a piece of equipment needed for the pediatric cancer research laboratory at Steele Children’s and subsequently we have expanded from there. Now we are very excited about funding our Eighth Courtney Page Zillman Doctoral Fellow. We believe in investing in people and researchers, because that is how we will help to find a cure,” said Zillman-Ogden.
Among the research Courtney’s Courage has supported is work in immunotherapy and haploidentical stem-cell transplants by Dr. Emmanuel Katsanis, professor of pediatrics, medicine, pathology and immunobiology and researcher at Steele Children’s Research Center and the UA Cancer Center.
“Most recently Courtney’s Courage has supported our laboratory and its work in haploidentical bone-marrow transplant research. They helped to fund some of the work that set the stage for a phase I/II clinical trial that is now ongoing with some very exciting implications and results in pediatric bone marrow transplants and adult bone marrow transplants,” said Katsanis.
Katsanis said that in this clinical trial, a drug called Cyclophosphamide is replaced with Bendamustine to help protect patients from graft versus host disease — a potentially serious complication of allogeneic stem cell transplantation — while potentially decreasing relapses after haploidentical bone-marrow transplantation.
“On the treatment arm of the clinical trial, we found that the occurrence of graft versus host disease has been mild, with no patients relapsing to date and patients demonstrating decreased viral reactivations,” said Katsanis
“It is still very early in the trial with six patients and five controls enrolled thus far, but we are very encouraged. Courtney’s Courage helped us with the preliminary mouse studies for this research, which led to funding from the Leukemia & Lymphoma Society for the clinical trial. If we had not had the funding to do the preliminary work, this trial may not have happened.”
Katsanis emphasized that funds from small nonprofits often plant the seeds that grow into federal grants and funding for research from large organizations such as the National Cancer Institute and the Leukemia & Lymphoma Society; this research can eventually result in new or improved treatments.
“Organizations like Courtney’s Courage not only provide the seed money to obtain preliminary data necessary for larger grants, but they also provide training for young scientists who will continue on long past my time in this area of research and make additional contributions,” Katsanis said.
Zillman-Ogden said Courtney’s Courage also has long-term impact on families of children with all types of cancer through a growing array of family assistance programs that range from emotional support to financial assistance with groceries, rent, gas, utilities, car repairs, insurance and other vital needs.
These programs have an immediate effect on families often reeling from a pediatric cancer diagnosis, according to Deanna Valenzuela, a pediatric social worker with Banner-University Medical Center.
“One of the things we notice when a family gets the diagnosis is they are immediately in shock and trying to plan how to take on the new challenge of this disease. Their world might stop while they are trying to plan, but the outside world continues: Bills still come in, the responsibility of caring for other kids is ongoing, employment is still there and they may be trying to figure out whether or not they can go back to work. Courtney’s Courage alleviates some of the stress by helping with expenses during this initial period of planning and that helps tremendously,” said Valenzuela.
Valenzuela said the emotional support provided by the organization — increasingly in partnership with other nonprofits such as Candlelighters Childhood Cancer Foundation of Southern Arizona, Bald Beauties Project and Arms Wide Open — is also key.
Programs include teen and young adult support groups for those in treatment and those who have recently completed treatment; sibling events; and bi-monthly “Momcology” dinners for the mothers of children in treatment.
“In many of the families, the moms are the ones taking on the responsibility of bringing the child to clinic appointments and handling their medications and medical care. These dinners allow them to take a few hours for themselves and help to build relationships with other moms. It opens their eyes so they can see they aren’t alone in dealing with this. And what better support is there than another mom who truly understand what they are going through?” Valenzuela said.
Overall, as Courtney’s Courage moves into the next decade, Zillman-Ogden hopes to continue to expand Courtney’s legacy through collaborations with other local nonprofits.
“We are small nonprofits with important programs and we know that by working together and pulling in resources from different places, we can have a bigger impact,” she said.