Fight Like the Averys
F.L.A.G. Grant
In 2021, The Uncle Kory Foundation pledged to fund the Fight Like the Averys Grant (F.L.A.G.) each year. This $50,000 yearly grant is dedicated to funding pediatric brain cancer research, and when possible, specifically medulloblastoma.
The Avery Family, while braving the devastating diagnosis and loss of both of their children, Kalea and Noah to medulloblastoma brain cancer, have also shined a light on the serious need for better pediatric cancer research. To date, only 4% of national funding from the National Institute of Health (NIH) goes to pediatric cancers. Together with the Avery Family we want to raise awareness of this grotesque disparity and work to fund better research now.
As of January, 2024, we have funded $150,000 towards medulloblastoma grants in the Avery Family’s honor.
Each fall, the Uncle Kory Foundation accepts Letters of Intent (LOIs) for the F.L.A.G. Grant.
Application process for this award will open on August 1, 2024.
Please email UKF for further questions on the application process.
F.L.A.G Awardees
Katrina O’Halloran, MD
Children’s Hospital Los Angeles
Grantee: Children’s Hospital Los Angeles
Project Lead: Dr. Katrina O’Halloran & Dr. Ashley Margol
Grant Title: Cerebrospinal fluid liquid biopsy in pediatric embryonal central nervous system tumors
Grant Type: F.L.A.G Grant
Year Awarded: 2023
Amount: $50,000
Duration: 1 year
Summary: Brain and spinal cord tumors continue to be a major cause of both illness and death in children. Tumor DNA sequencing has provided important insight into the drivers of different cancers. Detecting tumor DNA in spinal fluid by performing DNA sequencing as a “liquid biopsy” can help in making a diagnosis, monitoring response to treatment, and predicting risk for relapse. For example, researchers have shown that if medulloblastoma DNA is detectable at the completion of therapy, there is higher risk for relapse for that child.
Liquid biopsy technology using spinal fluid has been developed at Children’s Hospital Los Angeles. In pilot studies, the platform successfully detected a variety of tumor DNA alterations in various tumors including medulloblastoma, ependymoma, atypical teratoid/rhabdoid tumor, diffuse midline glioma (including diffuse intrinsic pontine glioma), high grade glioma and low-grade tumors (including pilocytic astrocytoma). In this project we propose serial spinal fluid liquid biopsy assessments in children diagnosed with embryonal brain and spinal cord tumors. Liquid biopsies will be performed at diagnosis, during treatment, at the end of therapy, during surveillance and at relapse.
Importantly, results of liquid biopsy testing will be provided as a report and the clinical team may use this information to modify and optimize treatment. In numerous prior patients, a liquid biopsy in conjunction with the overall clinical picture has led to a change in therapy for personalized treatment. It is our hope that this technology will help to improve outcomes for children with brain and spinal cord tumors.
JOSH NEMAN, PHD
Keck School of Medicine, USC
Grantee: University of Southern California
Project Lead: Josh Neman, PHD
Grant Title: The role of GABA transaminase in medulloblastoma local recurrence and its potential as a therapeutic target in medulloblastoma metastasis
Program Area: Medulloblastoma - Pediatrics
Grant Type: F.L.A.G Grant
Year Awarded: 2022 and 2023
Amount: $100,000
Duration: 2 years
Summary: Medulloblastoma is a pediatric brain tumor that has a propensity to locally recur and to spread to other regions of the brain and spinal cord. Patients with these diagnoses will almost always succumb to their disease, highlighting the importance of performing research on these phenomena. When medulloblastoma tumors recur, cancer cells that were left over from tumor resection surgery evolve, adapt, and become resistant to chemotherapy and radiation treatments. They begin to grow more aggressively than the original tumor, are difficult to treat, and have limited treatment options. Likewise, when medulloblastoma spreads to the spine, called metastasis, treatment is extremely difficult as surgery and radiation/chemotherapy have immense risks. The current proposal uses our strong foundational understanding of medulloblastoma, brain development, and neuroscience to 1) advance our understanding of medulloblastoma local recurrence and 2) develop targeted therapies for patients with medulloblastoma metastases that are safe. We hypothesize that medulloblastoma will exploit a protein called GABA Transaminase, also known as ABAT, to survive in the harsh conditions caused by radiation and chemotherapy and allow medulloblastoma to recur. Moreover, because metastatic medulloblastoma are dependent on ABAT to grow, as our recent publication has shown, we hypothesize that a new potential ABAT inhibitor, NEO216, will serve as a safe and effective targeted therapy for patients. These studies will have potential near-term impact on understanding how the pediatric brain tumor medulloblastoma recurs and how we can directly target medulloblastoma metastases – the principal reasons for patient mortality. Overall, the findings from our proposed research plan will reduce the burden on patients and their families, will improve their quality of life, and most importantly, increase the overall survival of pediatric patients who suffer from this terrible disease.
The Avery Family knows the true meaning of the word fight. When parents Duncan & Nohea Avery learned that their 7 year-old daughter, Kalea, was diagnosed with a brain tumor, they were prepared to fight. Thirteen days later, when their 5 year-old son, Noah, was diagnosed with the same tumor, they knew they had to double down. As the Avery Family has navigated their cancer battle, the Cancer Support Community (CSC) has provided comfort, resources, and been a constant source of support. As mom Nohea knows all too well, childhood cancer is not the same as other cancers. “So much more research needs to be done for better and safer treatments for these little bodies. That’s why foundations and things like the Tour de Pier are so important.” Cancer does not take it easy on children. Since their initial battles, both Noah & Kalea had a cancer recurrence, and CSC was there to assist them. Sweet Kalea passed away on September 1st, 2022, and Noah, Nono, passed away on December 16th, 2022. Our love and fight continues for the Avery Family.
Funds raised by the Uncle Kory Foundation and Tour de Pier help fund research and make support programs possible to ensure that families never have to face this disease alone. Fight like the Averys.