PNOC Foundation

Francesca “Beans” Kaczynski was just six months old when she was diagnosed with atypical teratoid rhabdoid tumor (ATRT), a rare and aggressive pediatric brain tumor.

Her parents, journalists Andrew Kaczynski and Rachel Louise Ensign, approached her diagnosis the way they knew how: they researched relentlessly, spoke with families and physicians across the country, and searched for every possible treatment option for their daughter. They ultimately brought Francesca to Boston for treatment at Dana-Farber Cancer Institute and Boston Children’s Hospital.

Francesca lost her life on Christmas Eve 2020 at just nine months old. In her memory, Andrew and Rachel created Team Beans and have since become powerful advocates and funders of pediatric brain tumor research, with a particular commitment to infant brain tumors and ATRT.

Their experience also exposed one of the fundamental challenges of studying a cancer as rare as ATRT: critical information about patients, treatments, tumor biology, and outcomes was scattered across institutions. Team Beans has made transformational investments in PNOC030, a first-of-its-kind ATRT registry designed to bring clinical information, imaging, biospecimens, and molecular data together so researchers can learn from the experiences of children treated across the country.

That investment is helping build something the ATRT community has long needed: a shared body of knowledge that researchers can use to better understand the disease, identify patterns in treatment and outcomes, and inform the next generation of studies.

Andrew has written that Francesca’s story did not end with her life, and Team Beans is extraordinary evidence of that. We are deeply grateful to Andrew, Rachel, and the entire Team Beans community for ensuring that what researchers learn from children with ATRT today can help change what is possible for the children who come next.

For nearly three decades, Soccer for Hope has focused on children with life-threatening diseases, with a particular commitment to rare childhood cancers that receive little or no dedicated research funding.
Founded by Oliver and Jamie Wyss in 1998, Soccer for Hope was shaped first by Oliver’s survival from aplastic anemia and later by the experiences of their children, Hudson and Abella, who were both diagnosed with rare brain tumors. After battling multiple recurrences and secondary cancers, both children lost their lives; Hudson at age three and Abella at age eleven. Those experiences honed the organization’s mission around childhood cancer research, awareness, and essential support for families.

That commitment to rare cancers has made Soccer for Hope an important partner in PNOC’s work on choroid plexus carcinoma (CPC), an exceptionally rare pediatric brain tumor where limited patient numbers make building the evidence needed for better treatment especially challenging.

Soccer for Hope has supported the research that helped lay the groundwork for PNOC033, a new study developing a molecular risk-adapted treatment strategy for children and young adults with newly diagnosed CPC. The goal is to use what researchers are learning about the biology and genetic drivers of these tumors to better tailor treatment to each child’s disease.

From soccer camps and community events to investments in some of the rarest pediatric cancers, Oliver, Jamie, and the Soccer for Hope community have spent decades turning personal experience into action. We are deeply grateful that their commitment now extends to PNOC and to children and families facing CPC.

Noah's Legacy Foundation was created in honor of Noah, who courageously battled a rare pediatric brain tumor for five and a half years before passing away at the age of six. Through that journey, Noah's family experienced firsthand the urgent need for greater investment in childhood cancer research and stronger collaboration among researchers working to find better treatments.

That commitment has made Noah's Legacy Foundation an extraordinary partner to PNOC. Their support has helped advance PNOC-27, an innovative precision medicine clinical trial for children with recurrent medulloblastoma and ependymoma. By combining genomic sequencing with rapid drug testing on tumor samples, researchers are working to better understand how each child's tumor responds to different therapies, bringing us closer to more personalized and effective treatment strategies. The foundation has also invested in the collaborative research platform that allows PNOC investigators to launch new studies, share discoveries, and accelerate progress across pediatric brain tumors.

As Noah's family shared, supporting PNOC is one of the most meaningful ways they can honor Noah's legacy and continue fighting for the cures that children like him deserve. We are profoundly grateful for their partnership and for the hope they continue to create for children and families facing pediatric brain tumors every day.

The More Than Four Foundation was built around a stark reality: children deserve more than the 4% of federal cancer research funding dedicated to pediatric oncology.

That belief drives the foundation’s commitment to increasing investment in pediatric cancer research and supporting the science that can deliver better treatments for children. In 2025, More Than Four became a PNOC partner and quickly made a significant impact on our ependymoma research.

Their support has helped advance PNOC027, a precision medicine study for children with recurrent ependymoma and medulloblastoma that uses genomic analysis and rapid drug testing on each child’s tumor to help identify promising treatment options. More Than Four has also supported PNOC041, which is investigating whether metformin, a well-established medicine used for decades, could be repurposed as a treatment for recurrent PFA ependymoma.

As More Than Four shared with us, their support of PNOC reflects a belief that dedicated pediatric cancer research “gives answers to patients seeking treatment and provides hope to the families that love them.” We are grateful to have More Than Four as a partner and for the impact they have already made in advancing new approaches for children with ependymoma.

For more than three decades, the Jordan and Kyra Memorial Foundation has supported children with cancer and their families at every point in the journey.

The foundation was created in memory of Jordan Stuart and Kyra Pillsbury, two Bay Area children who died from brain tumors at young ages. Both families experienced firsthand the refuge of Family House while their children underwent treatment, and those experiences helped shape a mission that has always extended beyond research alone.
Over the years, the foundation has invested in three interconnected priorities: advancing pediatric cancer research, providing families a home during treatment through Family House, and supporting the emotional, practical, and financial needs of families through Jacob's Heart Children's Cancer Support Services. Its support helped Family House expand into the 80-room facility that today serves thousands of families each year, while decades of investment in pediatric cancer research have helped scientists pursue better treatments for children.

That legacy is now becoming part of PNOC's story. Co-founder Rob Stuart serves on the PNOC Foundation Board, bringing decades of commitment to children and families to our organization, and the Jordan and Kyra Memorial Foundation is the Presenting Sponsor of our 2026 Gratitude Gala.

We are deeply grateful to Rob, the Stuart and Pillsbury families, and the entire Jordan and Kyra Memorial Foundation community for more than 30 years of showing what it means to care for children with cancer while continuing to push toward a future with better treatments.

We are celebrating the launch of PNOC035, a groundbreaking clinical trial for children, adolescents, and young adults with recurrent or progressive atypical teratoid rhabdoid tumor (ATRT). The milestone launch of this new research platform, designed to accelerate the discovery and evaluation of promising therapies for one of the most aggressive pediatric brain tumors, represents years of collaboration, dedication, and shared commitment among researchers, clinicians, families, industry partners, and supporters.

Developed by the Pediatric Neuro-Oncology Consortium (PNOC) ATRT Working Group, PNOC035 is a platform clinical trial designed to evaluate novel therapies and combination strategies for patients whose ATRT has returned or progressed after initial treatment. Open to eligible patients aged 1 to 39, the first patient enrollment this past week at UCSF Benioff Children’s Hospital represents a significant step forward in PNOC’s mission to rapidly translate scientific discoveries into new treatment options for children facing devastating diagnoses. For children with recurrent ATRT, until now, available treatment options were extremely limited.

"Children with recurrent ATRT urgently need new options," said PNOC Principal Investigator Dr. Ashley Margol, who leads the PNOC ATRT Working Group. "The opening of PNOC035 and enrollment of the first patient mean we can finally meet that need with a trial designed not just to test a single therapy, but to keep developing new treatments as our understanding of ATRT grows. This study gives us all hope."

Read the press release here:
https://www.einpresswire.com/article/933267656/first-patient-enrolled-in-pnoc035-clinical-trial-for-recurrent-atrt-major-milestone-in-pediatric-brain-tumor-research

For nearly a decade, the Mithil Prasad Foundation has been a steadfast partner in PNOC's mission to improve outcomes for children diagnosed with diffuse midline glioma (DMG), one of the most devastating pediatric brain tumors.

Created in memory of Mithil Prasad, the foundation has consistently invested in the kind of bold, collaborative research that moves the field forward. From supporting PNOC022 and the DMG Adaptive Combination Trial (DMG-ACT) platform to advancing innovative work in digital pathology and artificial intelligence for biomarker discovery, their philanthropy has helped equip researchers with better tools to understand these tumors and evaluate new therapies more efficiently. The foundation's 2024-2026 grant also supported Drs. Sabine Mueller and Sebastian Waszak's project using digital pathology and AI to identify biomarkers in PNOC clinical trials.

As the foundation shared with us:
"Mithil Prasad Foundation has been working with PNOC for almost a decade now. Its leaders are always thinking of innovative ways to conduct research and collaborate with many institutions, which is critical in pediatric neuro-oncology given how rare and complex these tumors are."

We are deeply grateful for the Mithil Prasad Foundation's enduring partnership and for their belief that collaboration, innovation, and persistence will change the future for children and families facing pediatric brain tumors.

Heading home after summer vacation? If you travel with you can donate your miles to accelerate collaborative research, fuel treatment breakthroughs, and expand access to PNOC's innovative therapies for children fighting brain tumors. Every mile helps create a future where we lose no child to brain cancer! DONATE HERE: https://donate.mileageplus.com/Charity/Details/3214213

The Lilabean Foundation for Pediatric Brain Cancer Research has been a steadfast partner of PNOC, united by a shared commitment to advancing innovative research for children with brain tumors. Over the years, the foundation has supported groundbreaking science with one goal in mind: bringing better treatment options to children and families who urgently need them.

Most recently, the Lilabean Foundation helped advance PNOC041 and PNOC044, two clinical trials exploring new uses for well-established medicines in children with recurrent brain tumors. By investigating whether existing therapies can be safely and effectively repurposed, these studies aim to accelerate the development of new treatment options while building on medicines clinicians already know well. It's an approach that reflects both scientific rigor and the urgency families face when time matters most.

As the Lilabean Foundation shared with us, "Supporting PNOC means funding science that moves fast enough to matter for kids who can't wait. Trials like PNOC044 and PNOC041 turn existing, trusted medicines into new hope for children facing relapsed brain tumors, and that's exactly the kind of impact the Lilabean Foundation is proud to be part of."

We are deeply grateful for the Lilabean Foundation's longstanding partnership and their continued investment in research that is collaborative, innovative, and focused on delivering better outcomes for children with brain tumors.

The Wait Is Over—Gratitude Gala Tickets are available today!

Read all about it here: https://www.einpresswire.com/article/932017370/pnoc-foundation-to-host-2026-gratitude-gala-in-san-francisco-to-advance-pediatric-brain-cancer-research

Secure your tickets here: https://pro.gofundme.com/event/gratitude-gala-2026/e763498