Every child’s cancer is different. Their treatment should be, too.
My daughter Greta has been fighting a rare and aggressive pediatric brain cancer called ependymoma since she was two years old.
Over the past four years, she has endured more than 15 brain surgeries, including four major operations, radiation, chemotherapy, CAR T-cell therapy, and multiple recurrences.
But those words don’t really capture what that means for a child.
After each tumor, Greta has had to relearn how to walk. At one point, she even had to relearn how to swallow.
Each time, she has fought her way back.
And today, Greta is thriving.
She swims. She crafts. She loves candy. She just started kindergarten. She wants to grow up to become a veterinarian and a babysitter.
If we can stop this cancer from continuing to return, Greta has the potential to grow up, go to college like her big sister, have a career, build a family, and live a full life.
Our job is to get her there.
There has to be a better way.
After four years of fighting pediatric brain cancer, I have become increasingly frustrated by the options available to children like Greta.
At times, recurrent cancer feels like a terrible game of whack-a-mole: a tumor appears, we remove or treat it, Greta recovers and learns to walk again—and then we wait and hope another one doesn’t appear.
When it does, the entire cycle begins again.
I don’t want Greta to spend her childhood recovering from the last tumor while we wait for the next one.
I want to stop the tumors from coming back.
When standard treatments stop working, families may turn to clinical trials. These trials are critically important to advancing medicine, but by design they are built to answer specific scientific questions across groups of patients. That means the available trial may not perfectly match the biology of one particular child’s tumor.
Cancer is extraordinarily individual.
Through Greta’s treatment, I began connecting with other parents of children with recurrent pediatric brain tumors. We shared MRI reports. We compared tumor-testing results. We talked about treatments, side effects, responses and recurrences.
We were essentially pooling information ourselves, trying to understand why something worked for one child but not another.
The conclusion I kept coming back to was remarkably simple:
Every child’s cancer is different. Their treatment should be, too.
For the first time, we may have the tools to do it.
There is tremendous reason for hope.
When Greta was first diagnosed four years ago, her tumor was tested against roughly 20 genetic markers. After a later recurrence, we were able to investigate thousands of characteristics of her tumor.
That difference is staggering.
Today, increasingly sophisticated molecular testing can tell us far more about what is driving an individual cancer. Laboratory testing can sometimes help identify drugs worth investigating. Artificial intelligence and computational tools can help researchers analyze enormous amounts of biological data.
And emerging technologies may allow us to turn some of that information into treatments designed specifically around an individual patient’s cancer.
The science is moving incredibly quickly.
Unfortunately, access isn’t.
Many of these tests and individualized treatments are experimental, expensive, or not covered by insurance. Families often have to find the experts, coordinate institutions, pursue regulatory pathways and raise the money themselves.
I have spent thousands of hours over the past four years trying to understand Greta’s disease and her options. We have traveled thousands of miles. We have spent hundreds of days in hospitals. I have asked doctors to take one more look, make one more call, consider one more idea.
And I have met extraordinary physicians, nurses and researchers along the way who desperately want better options for these children.
I believe we can help build them.
The first mission: Greta’s personalized mRNA vaccine
The first project of The Greta Initiative is intensely personal:
We are raising money to design, manufacture and deliver a personalized mRNA cancer vaccine for Greta.
This isn’t an off-the-shelf vaccine.
Researchers will use information derived from Greta’s own tumor to identify potential targets and create a vaccine designed specifically around her cancer.
The goal is to teach Greta’s immune system to recognize those tumor-specific targets—and hopefully find and attack cancer cells carrying them.
Why an mRNA cancer vaccine?
Personalized mRNA cancer vaccines are one of the most exciting emerging areas of cancer research.
The concept is remarkably personal: sequence an individual patient’s tumor, identify abnormalities unique to that cancer, and create a vaccine designed to teach that patient’s immune system to recognize those targets.
And researchers are beginning to see encouraging results.
In melanoma, a randomized Phase 2 study found that adding a personalized mRNA cancer vaccine to the immunotherapy pembrolizumab improved disease control compared with pembrolizumab alone in patients with high-risk melanoma following surgery.
Perhaps even more remarkable are the early results in pancreatic cancer—one of the most difficult cancers to treat.
Researchers created an individualized mRNA vaccine using each patient’s own pancreatic tumor. Half of the vaccinated patients developed strong vaccine-induced T-cell responses against their cancer.
At an extended median follow-up of more than three years, the patients who developed those vaccine-induced immune responses had gone significantly longer without their cancer returning than the patients who did not develop the response.
Researchers also found that many of the cancer-targeting T-cell clones created by the vaccine were still present approximately three years later—suggesting that personalized vaccination may be capable of creating remarkably durable immune memory.
These are small, early studies. And pancreatic cancer and melanoma are very different diseases from Greta’s ependymoma.
They do not prove that a personalized mRNA vaccine will work for Greta.
But they demonstrate something incredibly important: scientists can analyze an individual person’s tumor, identify tumor-specific targets, manufacture a personalized mRNA vaccine around those targets, and generate a powerful and potentially long-lasting immune response.
We want to bring that same personalized approach to pediatric brain cancer.
We don’t know whether the vaccine will work for Greta.
But we believe the science provides a compelling reason to try.
And Greta does not have years to wait for this technology to make its way through traditional clinical trials and eventually become available to children.
So we are trying to bring the technology to her now.
This is not a miracle cure. It is part of a strategy.
We aren’t looking for one magic drug.
One of the biggest lessons I have learned during Greta’s four-year cancer journey is that a cancer as complicated as hers may require a symphony of treatments, each doing something different.
Our goal is to use the personalized vaccine as part of a coordinated treatment strategy designed around Greta—the biology of her tumor, where her disease is located, what treatments she has already received, and what we have learned from her previous tumors.
That may include surgery and other targeted or immune-based treatments alongside vaccination.
Rather than asking, “What treatment is normally given to a child with ependymoma?” we want to ask:
“What combination of treatments makes the most sense for Greta’s cancer?”
Why do we have to pay for it?
Because this isn’t an approved standard treatment for pediatric ependymoma.
We are working with physicians, scientists and manufacturers toward a pathway that would allow Greta to receive her personalized vaccine under FDA authorization, potentially through a single-patient Investigational New Drug application, commonly called a single-patient IND.
A single-patient IND can allow a patient with a serious disease to receive an investigational therapy outside of a traditional clinical trial, subject to the necessary physician, regulatory and institutional approvals.
But getting there requires far more than simply making a vaccine.
There is tumor analysis.
There is sequencing and computational work to determine which abnormalities might make the best vaccine targets.
There is vaccine design and manufacturing.
There is extensive quality and safety testing.
There is regulatory work.
There are physicians and institutions that need to coordinate its administration.
And then Greta needs to be carefully monitored after receiving it.
Because this is experimental personalized medicine, much of this work is not covered by insurance.
So we have to fund it ourselves.
That’s where you come in.
We are asking people to help us build Greta’s vaccine.
You don’t need to make an enormous donation.
Give $5.
Give $25.
Give $100.
Give whatever feels right for your family.
And then please share Greta’s story.
Because thousands of people giving a little can allow us to do something enormous.
Greta is first. We hope she won’t be the last.
Our immediate mission is Greta.
But The Greta Initiative was created with a much larger vision.
If we can successfully navigate this process—bringing together advanced tumor analysis, physicians, scientists, manufacturers, regulators and funding—we want to document what we learn and make that knowledge available to other families.
Through this journey, I have met parents all over the country doing exactly what I have been doing: sitting up late at night reading scientific papers, sending MRI reports to other parents, comparing molecular testing, searching clinical trials, calling researchers and trying to figure out what else might save their child.
No parent should have to reinvent this process alone.
The Greta Initiative ultimately hopes to help families pursue personalized medicine by helping them understand the testing and treatment options available to their child, sharing information across families and researchers, and helping fund investigational treatments and related medical expenses that insurance and traditional research funding often do not cover.
And when something works, we want that information shared.
We want researchers to learn from it.
We want pharmaceutical companies to learn from it.
We want insurers to eventually pay for it.
And most importantly, we want the next family to have a path that is easier to navigate than ours was.
Greta can be the beginning of something bigger.
We cannot promise that this vaccine will cure Greta.
But we can promise that we will keep pushing.
We can use every piece of information her tumors give us.
We can bring extraordinary people together.
We can pursue treatments designed around Greta rather than waiting for the perfect clinical trial to appear.
And we can share everything we learn so that the path is a little easier for the child who comes next.
Greta has spent four years fighting cancer.
She has undergone more than 15 brain surgeries.
She has endured radiation, chemotherapy and CAR T-cell therapy.
She has learned to walk again and again.
She has even had to learn how to swallow again.
And somehow, through all of it, she has kept being Greta.
Now we’re asking you to fight alongside her.
Help us build Greta’s personalized mRNA vaccine.
Help us give her the chance to grow up.
And help us build a future where personalized medicine isn’t something desperate parents have to find and fund on their own.
Please donate. And please share Greta’s story.