2024 Action Days: Join Us in Urging Congress to Help Children with Cancer
On Christmas Eve, 2019, CNN correspondent René Marsh and her husband Kedric heard the words “Your son has a large mass in the center of his brain.” Doctors diagnosed Blake Vince Payne at 9 months old with pineoblastoma, a fast-growing and rare type of brain cancer that forms deep inside the gland that produces melatonin. Although prognosis has improved in recent years for some pineoblastoma patients, it’s deadly for infants.
Little is known about infant pineoblastoma and how to treat it. Because pediatric pineoblastoma is rare — accounting for about 1 of every 100 brain tumors in children – infants like Blake are treated with chemotherapy drugs developed and approved decades ago for adults.
“In Blake’s case, one of his chemotherapy drugs was developed seven decades ago; even though science has shown pediatric cancer is often more aggressive than adult cancer, and molecularly different,” writes René in a recent essay for the Today Show.
These treatments often do more harm than good. After his first round of chemotherapy, Blake went into cardiac arrest. “Blake’s oncologist later determined one of his chemotherapy drugs triggered this near fatal reaction,” shares René. “The treatment protocol that second, third and fourth opinions all suggested was Blake’s ‘best chance of survival’ nearly killed him and ultimately did not cure him.”
After Blake passed away one month after his second birthday, René and Kedric turned to the Pediatric Brain Tumor Foundation to see how they can help other children diagnosed with brain cancer and their families. PBTF partnered with them to establish the Blake Vince Payne Star Fund in his honor. Through donors’ generosity and proceeds from René’s children’s book The Miracle Workers: Boy vs. Beast, the fund is the largest known fundraising effort dedicated to infant pineoblastoma research.
The largest patient advocacy funder of pediatric brain tumor research, PBTF works with leading scientists to identify gaps in the medical community’s understanding of brain tumors. After seeking out research projects with the greatest potential to tackle infant pineoblastoma, the Blake Vince Payne Star Fund at PBTF is funding two pioneering new research projects helmed by St. Jude Children’s Research Hospital’s Dr. Paul Northcott and SickKids hospital’s Dr. Annie Huang. Both projects received unanimous funding approval by PBTF’s scientific advisors.
Dr. Huang’s project, Targeting the Achilles heels of Pineoblastoma – a rare orphan baby brain cancer, will combine CRISPRi technology with a Zebra Fish brain tumor model to uncover key druggable pathways for RB1/MYC driven infant Pineoblastoma. Dr. Northcott’s project, Rare But Unforgotten, is developing preclinical models of high-risk pineoblastoma subgroups and using them to identify therapies designed for the specific biology of these brain tumors. Together, these two research projects will serve as an important and timely foundation for launching an intensive attack on pineoblastoma, with the vision of translating findings into the clinic and improving outcomes for children and their families.
“There’s hope for life-changing therapies when brilliant minds like Drs. Northcott and Huang are able to turn their attention to the unique challenges of this disease through PBTF’s seed funding,” says Courtney Davies, PBTF President and CEO. “We’re honored and humbled by René and Kedric’s commitment to help other families going through the unthinkable. Through their partnership and supporters’ continued generosity, we can ensure resources remain available for researchers — attracting more new talent to the field and paving a clear path forward to change and save children’s lives.”
You can join René’s family in making better treatments and more innovative research possible. Sign up today to learn about ways to get involved. If you or a family you know need help navigating a child’s brain cancer journey, we’re here for you. Call PBTF’s Helpline at 800-253-6530, x306 to speak with one of our Family Support managers and receive the information and emotional or financial support you need.
In 2023, the Pediatric Brain Tumor Foundation community answered the call to create a brighter future for children with brain tumors and their families. Read about what your support made possible in research, family support and advocacy.