PNOC Foundation

PNOC Foundation Leading the fundraising efforts for PNOC's pediatric brain cancer research and clinical trials.

Read about us in Marin Magazine: https://marinmagazine.com/sponsored/be-a-hero-and-help-raise-critical-funds-for-pediatric-brain-tumor-research/

For decades, the Pediatric Brain Tumor Foundation has helped shape the field of pediatric brain tumor research, investin...
08/31/2026

For decades, the Pediatric Brain Tumor Foundation has helped shape the field of pediatric brain tumor research, investing in science while supporting children and families through every stage of a brain tumor diagnosis. Today, PBTF is the largest patient advocacy funder of pediatric brain tumor research, with more than $60 million invested in research.

PBTF’s partnership with PNOC goes back to our earliest years. Their support helped establish the PNOC Operations Center, building critical infrastructure to coordinate clinical trials and research across participating institutions. They also supported PNOC001, our Phase II study of everolimus for children with recurrent or progressive low-grade glioma.

That shared history is especially meaningful as both organizations look toward what comes next. PBTF’s new research strategy puts collaboration and connected data at the center of accelerating discovery, an approach closely aligned with the model PNOC has built across more than 40 institutions around the world.

As PBTF CEO Jeff Gelfand shared, “There is no cure without collaboration, and PNOC is collaboration in action.” We are incredibly grateful to Jeff, Dr. Misha Mehta, and the entire PBTF team for their longstanding partnership. From helping build PNOC’s early infrastructure to investing in clinical research, PBTF has been part of our story from the beginning, and we are excited about what our organizations can accomplish together in the years ahead.

A huge THANK YOU to everyone who has donated to our United Miles on a Mission campaign! ✈️ We have just ONE DAY LEFT to ...
08/31/2026

A huge THANK YOU to everyone who has donated to our United Miles on a Mission campaign!

✈️ We have just ONE DAY LEFT to help expand access to breakthrough treatment options for children fighting brain cancer.

✈️ If you haven’t donated yet, please consider contributing any spare United miles you have. Every mile will accelerate research toward cures.

✈️ It takes just 2 minutes to donate! DONATE HERE: https://donate.mileageplus.com/Charity/Details/3214213/PNOC-Foundation-Lose-No-Child

The TommyStrong Foundation was inspired by the courage and resilience of Tommy FitzPatrick during his two-year battle wi...
08/28/2026

The TommyStrong Foundation was inspired by the courage and resilience of Tommy FitzPatrick during his two-year battle with ependymoma.

Diagnosed at age four, Tommy and his family quickly learned how difficult ependymoma can be to treat and how few effective options exist when the disease returns. Throughout his fight, Tommy never lost hope, always looking forward to the day when he could experience the joy of simply being a kid again. Today, his family carries that spirit forward through a foundation dedicated both to finding better treatments for childhood cancer and supporting children and families navigating the disease.

That commitment has made the Tommy Strong Foundation an important partner in PNOC's ependymoma research. Over the years, their support has helped PNOC pursue several very different approaches to one of the field's most persistent challenges: what to do when an ependymoma returns.

They supported PNOC027, which uses genomic sequencing and real-time drug screening on an individual child's tumor to help identify promising treatment options. They also invested in PNOC028, an early-phase immunotherapy study investigating whether natural killer cells could be delivered directly into recurrent or progressive brain tumors. Most recently, they are helping advance PNOC041, which is testing whether metformin, a medicine used safely for decades, could be repurposed to treat recurrent PFA ependymoma.

As the FitzPatrick family shared with us, their partnership with PNOC means working alongside “an inspiring community of families, doctors, and researchers, all united in accelerating research, expanding clinical trials, and bringing hope to the shared mission of bettering the lives of children with brain cancer.”

We are deeply grateful to the FitzPatrick family and the Tommy Strong Foundation for carrying Tommy's spirit forward and for helping PNOC pursue better options for children with ependymoma.

5 Days Left: Turn Your United Miles Into Brain Cancer Research! Donate your United miles through our Miles on a Mission ...
08/27/2026

5 Days Left: Turn Your United Miles Into Brain Cancer Research! Donate your United miles through our Miles on a Mission campaign to help change the future for children with brain tumors.

Your miles will expand access to PNOC's innovative therapies for children fighting brain tumors, and bring together the world’s leading pediatric brain tumor experts to accelerate collaborative research and fuel treatment breakthroughs.

Can you donate to help us reach our goal, or share this post with your community?

https://donate.mileageplus.com/Charity/Details/3214213/PNOC-Foundation-Lose-No-Child?mc_cid=3329b83777

The James Beck Foundation is a new organization with a singular focus: changing the trajectory of diffuse midline glioma...
08/26/2026

The James Beck Foundation is a new organization with a singular focus: changing the trajectory of diffuse midline glioma (DMG).

Created in James’s honor, the foundation is being built around the urgent need for better treatments, better science, and better care for children facing a disease that remains dramatically underfunded and under-researched. Its approach combines targeted research funding, support for clinical trials, and investment in the children and families living with DMG.

PNOC is proud to be one of the foundation’s first partners in that work. Through its support of PNOC’s DMG research program, the James Beck Foundation is helping fund clinical research led by investigators across our international network and expand access to trials for children at institutions in the United States and around the world.

We are deeply grateful to the James Beck Foundation for choosing PNOC as an early partner and for building a foundation committed to giving children with DMG more options and families more reason for hope.

The Pied Piper Foundation began in 2020, when Ava Johnson, with the support of her parents, Mat and Ana, created a found...
08/25/2026

The Pied Piper Foundation began in 2020, when Ava Johnson, with the support of her parents, Mat and Ana, created a foundation following her diagnosis with ependymoma.

Since then, the Johnson family has built a commitment to pediatric brain tumor research that extends well beyond any single study. With a particular focus on ependymoma and other rare tumors, Pied Piper invests in the long-term research, infrastructure, and collaboration needed to move promising science toward better treatments for children.

That philosophy has led Pied Piper to the Executive Council of the Children's Brain Tumor Network, where the foundation supports preclinical research and data infrastructure designed to make future clinical trials more precise and impactful.

It is also what makes Pied Piper such an important partner to PNOC. Mat and Ana have consistently trusted PNOC to direct their support where it can have the greatest impact, helping strengthen the research and infrastructure behind our clinical trials. Year after year, they have also supported the PNOC Foundation Gratitude Gala, helping bring together the families, researchers, physicians, and partners who make this work possible.

We are incredibly grateful to Ava, Mat, Ana, and the Pied Piper Foundation for their trust in PNOC and for investing not only in today's research, but in the foundation required to make tomorrow's discoveries possible.

Oligo Nation began with a remarkable and deeply personal family story.In 2008, Brock and Pam Greene's nearly 17-year-old...
08/24/2026

Oligo Nation began with a remarkable and deeply personal family story.

In 2008, Brock and Pam Greene's nearly 17-year-old son, Spencer, was diagnosed with a brain tumor after experiencing focal seizures while playing soccer. Less than two years later, as Spencer prepared to begin chemotherapy, their older son, Zach, suffered a seizure during a family vacation. An MRI revealed that he, too, had a brain tumor.

Faced with both of their children at risk, Brock began looking for ways to support oligodendroglioma research and discovered that virtually no brain tumor foundations were funding research specifically focused on Oligo. He started raising money himself, but eventually realized that the disease needed something bigger: an organization singularly focused on building the research effort required to develop new treatments. In 2014, Oligo Nation was born.

From the beginning, Oligo Nation has taken a deliberately different approach. Rather than measuring success simply by grants awarded or research published, the organization focuses on translational science with the potential to move toward clinical trials in the near term. It has also brought leading brain cancer researchers together to identify obstacles and opportunities in the field and become a resource for patients and families navigating treatment options, second opinions, and insurance challenges.
What began with one family searching for better answers for their sons has grown into an organization changing the research landscape for oligodendroglioma.

We are grateful to Brock, Pam, and the entire Oligo Nation community for their determination to build better treatment options and a stronger future for people facing this rare brain tumor.

Storm the Heavens Fund began with a community that formed around seven-year-old Philomena “Bean” Stendardo after she was...
08/24/2026

Storm the Heavens Fund began with a community that formed around seven-year-old Philomena “Bean” Stendardo after she was diagnosed with DIPG in 2016.

Bean was, in her family’s words, a “spunky little firecracker” who loved school, sports, and her friends. During the ten months she fought valiantly against DIPG, more than 20,000 people rallied around Bean and her family. After Bean passed away in July 2017, her parents, Mina and Mark, created Storm the Heavens Fund to carry that extraordinary community forward and direct its energy toward finding a cure.

Since then, Storm the Heavens has become a significant funder of DIPG research, investing across the spectrum from laboratory discovery to clinical trials and patient access. The foundation fully funded the Philomena DIPG Research Initiative, helped expand access to Stanford’s CAR-T cell trial, supported expanded access to ONC201, and became a founding member of the DIPG/DMG Research Funding Alliance.

That commitment extends to PNOC, where Storm the Heavens has supported PNOC022, an adaptive platform trial evaluating promising treatment combinations for children and young adults with DMG. Their support reflects the urgency that has defined the foundation from the beginning: pushing promising science forward so children facing DIPG have more and better treatment options.

We are deeply grateful to Mina, Mark, and the entire Storm the Heavens community for carrying Bean’s spirit forward through their extraordinary commitment to DIPG research and for their partnership with PNOC.

Francesca “Beans” Kaczynski was just six months old when she was diagnosed with atypical teratoid rhabdoid tumor (ATRT),...
08/21/2026

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.

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