CBTN Annual Meeting Kicks Off With Family Story

The Children's Brain Tumor Network (CBTN) Annual Investigator's Conference kicked off yesterday with a heartfelt presentation from Misha Mehta, President of the Neev Kolte/BraveRonil Foundation and Senior Director of Research at the Pediatric Brain Tumor Foundation (PBTF).

Misha is a long-time friend and collaborator with Dragon Master Initiative, and her efforts on her son's behalf were Herculean. Most families would not have the knowledge or skills to impact care the way she was able to for Neev, but despite all efforts, brain cancer took Neev anyway. Her story is very familiar to us, but this version  shared compelling new insights that resonated deeply. Misha used some of the systems we helped develop to "hack" Neev's care. I hope this will give you a glimpse at what we might be able to do for patients in the future, and we are thankful to Misha for highlighting the need to do more, and at a faster pace, so that these children will have a fighting chance.

Here's a condensed version of what she shared:

In August 2020, my beautiful four-year-old son, Neev, was diagnosed with DIPG. Until that moment, those four letters meant nothing to me. But from the day of his diagnosis, they reshaped my entire life.

Being a researcher myself, I fell into a rabbit hole of DIPG research and quickly assumed two roles: Neev’s primary caregiver and his driving force for what I came to call an n=1 study—with “n” being my Neev.

We began with next-generation sequencing to identify the mutations driving his tumor. That led us to four Phase I clinical trials, and compassionate access to three experimental drugs. Alongside these treatments, I worked to mitigate chemotherapy toxicity—exploring the use of pre- and probiotics to ease his side effects. I monitored his immune system and metabolomics, trying to shape his microbiome and gut-brain axis. I ran pharmacogenomics to personalize dosing of known drugs, and carefully modulated his diet in the hope of influencing tumor growth.

We looked at everything: supplements, acupuncture, even advanced platforms like CAVATICA to mine datasets for insights. I left no stone unturned. I did it all - not just as a mother, but as a researcher, an advocate, a relentless seeker of answers.

Neev’s first trial was at Columbia University, using a convection-enhanced delivery device with MTX110. A pump was surgically placed in his abdomen, connected to a shunt that delivered the drug directly into his brain tumor, bypassing the blood-brain barrier. He endured both brain and abdominal surgeries, recovered bravely, and the infusion began the next morning. Within just five hours, my walking, talking, playful five-year-old lost all body function.

Imagine that—taking your child to the hospital full of life, and within 24 hours, all he could do was blink his eyes. One blink for no, two blinks for yes. And this was during COVID, when only one parent was allowed at his side.

Neev spent two and a half months recovering from treatment-related toxicity. Through sheer determination, he learned to walk, talk, and eat a little again. But ultimately, he returned to where he had been before the trial.

As part of his rehabilitation, he was admitted to UCSF, where he endured daily physical, occupational, speech, and swallow therapy—during Christmas of 2020. One day, barely verbal, he shook his head, looked down, and began to cry. When I asked why, he pointed to a gift from the child life specialist and to the tiny tree his father had brought him. Neev was sad because he thought Santa wouldn’t know where to find him if he is at the hospital. He never got to spend another Christmas at home. 

And yet my incredibly brave boy persevered. He relearned to walk three times. He became ambidextrous when one side of his body failed him. He communicated with his eyes, with sign language, with humor and love. His spirit never broke, even as his body did.

But our journey wasn’t just about courage—it was about relentless searching.

Despite everything we tried, it was not enough. Not because Neev lacked love, or determination, or access to every avenue I could find, but because the system failed him. The science was not there. The funding was not there. The treatments were not there.

This is a story of systemic failure. A failure to prioritize rare diseases. A failure to break down silos fast enough. A failure to move discoveries from bench to bedside at the pace that children like Neev desperately need.

On November 30, 2021, we lost our sweet boy. Since then, I have moved through the world with a broken heart. But I am here today—because Neev’s story, and the stories of so many others, demand that we do better.

And that is where collaboration becomes everything. No single lab, no single institution, no single foundation can solve pediatric brain tumors alone. The science is too complex. The diseases too rare. The resources too limited. 

Every one of us—families, researchers, clinicians, data scientists, engineers, policymakers, industry leaders, and advocates—holds a piece of the solution. Only when we bring those pieces together can we deliver the progress our children need."

Misha went on to highlight that in her new position at PBTF, she will embed this ethos into everything they do. She is  committed to accelerating discovery, breaking down silos, and embedding collaboration into everything PBTF funds.

She announced that PBTF is prioritizing projects that build on and expand openly shared resources generated through CBTN. They will now require applicants to collaborate with CBTN, by both accessing its integrated datasets and biospecimens, and by contributing new data back into the ecosystem. (Editor's note: PBTF will be one of the first major funders to make such a declaration.) It will ensure that a funded project doesn’t just advance one lab’s work, but it will drive collective progress for the entire global community.

She added, "This is not just policy. It’s culture change. It’s the recognition that collaboration is the only way we will deliver cures faster for kids. We’ve seen what happens when we work together: families driving FDA approvals, philanthropy seeding registries, and consortia enrolling hundreds of children in innovative trials.

CBTN is proof of what’s possible when we work together. It is an infrastructure of hope. And hope is what families like mine cling to. But hope must be matched with action. Our kids cannot wait for systems to catch up. They need us to act now.

I carry Neev’s light with me into every room like this. And I know he would be proud that we are no longer accepting the words, 'there’s nothing more we can do.'

On behalf of PBTF, and as a mother who knows the stakes firsthand—thank you for your dedication, your partnership, and your collaboration. Together, we can reimagine what’s possible. And together, we can change the future for every child with a brain tumor."

Dragon Master Initiative is closely aligned with CBTN, and we believe their mission is the way forward for not just children with brain tumors, but children with a multitude of conditons. We are thrilled that PBTF is making this commitment to the shared resources of CBTN. It is exactly this type of action that will drive the change these children require.