On January 31, 2026, at the Stand Up To Cancer Innovation Summit, I presented three recommendations intended not as incremental adjustments, but as structural corrections to a system that has tolerated delay for far too long  .

Individually, each recommendation addresses a material weakness in the pediatric brain tumor ecosystem. Together, they form an integrated operating framework—aligning biology, data, and capital around accountability, speed, and measurable patient impact.

This is not a call for refinement. It is a call for reset.

1. Replace Escalating Cytotoxicity with Tumor Behavior Modulation

Glioblastoma is not a simple malignancy. It is defined by molecular heterogeneity, intratumoral plasticity, adaptive resistance, immune evasion, and rapid recurrence.

Conventional approaches—dependent on blood–brain barrier–penetrant alkylating agents—deliver modest tumor exposure while imposing profound systemic and neurocognitive toxicity. After four decades of limited durability, continued reliance on highly toxic, low-yield regimens is biologically mismatched to the disease and increasingly difficult to defend.

A more rational strategy is to modulate tumor behavior rather than escalate cytotoxicity.

That includes:

• Immune-based strategies that overcome GBM’s immunosuppressive microenvironment
• Pathway-specific induction of apoptosis targeting dysregulated survival signaling
• Anti-angiogenic approaches disrupting aberrant vascular networks that enable proliferation and invasion

These strategies prioritize specificity, durability, and reduced collateral damage.

Accordingly, Summit RFAs and associated funding eligibility should explicitly require prioritization of nontoxic, behavior-modulating strategies, replacing continued investment in highly toxic legacy regimens.

Scientific rigor demands it. Ethical responsibility requires it.

2. Elevate Research Data to Financial-Grade Standards

Breakthrough discovery is increasingly dependent on high-quality, interoperable, and governed data. Yet cancer research data remains fragmented, inconsistently structured, and insufficiently governed.

In financial markets, decisions involving billions of dollars rely on standardized, auditable, board-level-governed data. Cancer research—where the stakes are measured in children’s lives—demands no less.

Research data should meet financial-grade standards across four dimensions:

Completeness & Standardization

Clinical, molecular, imaging, outcome, and longitudinal data must be comprehensive, harmonized, and structured for cross-institutional analysis.

Accuracy & Auditability

Clear provenance, version control, and validation processes must allow independent verification, mirroring financial audit requirements.

Governance & Accountability

Data stewardship must be elevated to board-level oversight with named executive accountability and enforceable controls.

Transparency & Timely Disclosure

Data should be shared responsibly and promptly; delayed or incomplete disclosure distorts decision-making and slows discovery.

Until research data is treated with the same seriousness as financial reporting, the ecosystem will continue to tolerate fragmentation, bias, and preventable delay.

Lives depend on data quality. Governance must reflect that reality.

3. Establish Community-Wide Governance of Fundraising and Reserves

Rare diseases operate under constraints of time, patient population, and data scarcity. In that environment, capital efficiency becomes a determinant of survival.

Uncoordinated fundraising and excessive reserve accumulation represent systemic friction—slowing discovery, fragmenting effort, and diluting impact.

To accelerate progress, the pediatric research community should adopt formal governance standards for fundraising and reserve practices, including:

• Transparent fundraising principles aligned with near-term, mission-critical research objectives
• Reasonable, disclosed limits on reserve accumulation
• Regular public reporting on reserves, fundraising efficiency, and deployment toward measurable patient impact
• Incentives that reward rapid and responsible conversion of philanthropic dollars into shared data and therapeutic advancement

Strong governance of fundraising is not restriction—it is discipline. It ensures that every dollar raised moves toward cure, not institutional comfort.

In a field where patients cannot wait and no single institution has sufficient scale to succeed alone; capital must move with urgency.

An Integrated Framework for Cure

Individually, these recommendations address science, data, and capital.

Collectively, they align the system.

• Biology drives therapeutic strategy.
• Data fuels discovery and AI-enabled insight.
• Capital accelerates execution and collaboration.

When one pillar is weak, progress stalls. When all three are governed with rigor and aligned around outcomes, acceleration becomes possible.

Following the Summit, SU2C will issue an RFA and assemble a dedicated Dream Team with the potential to cure malignant gliomas. That effort must be anchored not only in exceptional scientists, but in exceptional standards.

The pediatric brain tumor community does not lack intelligence.

It does not lack commitment.

It does not lack funding.

What it has lacked is structural alignment.

That alignment is achievable.

And now, it is non-negotiable.

Even among other pediatric brain tumors, high-grade glioma (HGG) is a disturbing diagnosis. It is the deadliest form of pediatric brain cancer and among the hardest to treat. These tumors grow deep within the brain, infiltrating healthy tissue so quickly and diffusely that even the best neurosurgeons cannot remove them completely.

For children and families, the statistics are staggering:

• HGG accounts for roughly 20 percent of all pediatric brain tumor deaths.
• Average survival is often less than two years from diagnosis.
• Existing treatments—surgery, chemotherapy, radiation—are toxic and largely ineffective, leaving those who survive with lasting physical and cognitive harm.

Despite decades of effort, survival rates for HGG have barely improved. Each year, more families hear the same heartbreaking words: “There are no good options left.”

Why Progress Has Been Sluggish

The traditional model of cancer research has unintentionally slowed discovery. For decades, hospitals and labs have stored patient samples and data within their own walls, developing therapies in isolation. This siloed approach meant that no single institution had enough cases—or enough diverse data—to reveal the full picture of how HGG grows, mutates, and resists treatment.

Without large, harmonized datasets, scientists could not:

• Identify the subtle biological patterns that differentiate tumor subtypes.
• Use artificial intelligence (AI) to predict treatment response.
• Design clinical trials fast enough to keep pace with the disease.

In short, every child’s story remained trapped inside a separate data silo.

Breaking Down Barriers Through Collaboration

The Children’s Brain Tumor Network (CBTN) has changed that story. CBTN unites more than 35 leading hospitals and research centers around the world, sharing biospecimens, imaging, and clinical data openly through the Pediatric Brain Tumor Atlas—one of the largest, most comprehensive datasets in existence. Bridge To A Cure is an Executive Council member of CBTN, helping to fuel this barrier-breaking momentum.

For the first time ever, researchers can see across institutions, compare results, and build on each other’s work with relative ease. This collaborative, open-science model has already begun to accelerate discoveries across multiple tumor types.

But for HGG—the most aggressive of them all—the work must go even further.

The Next Leap: Making Data FDA-Ready

CBTN now holds the largest open-access collection of HGG data in the world, contributed by 900 brave children and their families. To unleash its full power, this data must be verified, standardized, and connected at a level that meets FDA gold-standard quality—the rigorous benchmark required to design clinical trials, support regulatory submissions, and serve as the foundation for AI-driven discovery.

That is the focus of the Bridge To A Cure Foundation’s flagship initiative: The Clinical Validation of the High-Grade Glioma Cohort.

Through this project, specialists will:

• Clean and lock 900 patient records to regulatory-grade quality.
• Harmonize imaging, molecular, and clinical data across all sites.
• Validate these datasets in real time to inform AI-powered analyses and discoveries.

When complete, this will be the first FDA-ready pediatric brain-cancer dataset—a resource that researchers, clinicians, and regulators worldwide can trust to accelerate safer, more effective therapies.

How This Work Changes Everything

Validated, interoperable data is more than a technical milestone—it is the foundation for cures. With it, scientists can:

• Develop AI models that uncover molecular targets invisible to the human eye.
• Identify drugs that attack tumors while sparing healthy tissue.
• Launch clinical trials faster, guided by real-world evidence.
• Replace the old trial-and-error approach with precision, data-driven care.

For families, this means shorter paths to new therapies and treatments that heal without harm. For researchers, it means an end to guesswork and duplication. For donors, it means every dollar drives measurable, lasting change.

How Donors Fulfill the Promise

Bridge To A Cure Foundation is raising $150,000 to complete CBTN’s transformational work. Every contribution is urgently needed and helps prepare this data for global use, accelerates discovery, innovates through AI, and develops non-toxic therapies.

And now, thanks to a $50,000 matching gift from a generous anonymous donor, every donation made through the end of the year will be doubled.

The 900 children who contributed their data have given all they can. Now it’s our turn to honor that courage by turning data into discovery and discovery into cures.

Double your impact. Fulfill the promise.

Donate at bit.ly/BTAC-double-impact.

The fight against childhood cancer is a complex challenge requiring a united and strategic approach. While numerous passionate organizations are dedicated to this cause, a fragmented landscape can hinder progress. As we mentioned in our October blog, researchers, clinicians, patient advocates, and technology companies are already banding together to pool their knowledge and expertise to reimagine how pediatric disease research is conducted. This same collaborative spirit driving the sea change in research can also work when it comes to philanthropy and philanthropic groups you support.

To achieve a future where childhood cancer is no longer a life-threatening disease, we must:

• Support Innovative Research: Fund groundbreaking research projects that have the potential to revolutionize real-time, real-world treatment.
• Advocate for Policy Change: Work together to influence healthcare policies that prioritize pediatric cancer research.
• Foundational Collaboration: Partner with other foundations working toward the same goal to amplify impact on pediatric cancer research.

One possible path forward is by pooling resources and effort. In cooperation with other organizations, Bridge To A Cure Foundation can significantly enhance its impact and accelerate the pace of discovery.

The Missing Pieces

One of the biggest challenges in the pediatric cancer research field is the lack of coordination among non-profit organizations. This fragmentation can lead to inefficiencies:

• Redundancy in fundraising efforts: Competing for limited resources can dilute the impact of individual organizations.
• Duplication of research: Overlapping research projects can slow overall progress.
• Operational inefficiencies: Smaller organizations may struggle with administrative burdens, diverting funds from research.

A Call for Collaboration

Inspired by the collaborative spirit of the scientific community, we believe that philanthropic organizations can achieve an even more significant impact. As the pediatric cancer research landscape evolves, there is a growing need for philanthropic organizations to work together more closely. These organizations can significantly impact the field by aligning their efforts and pooling resources. One key challenge is to ensure that funding is directed towards the most promising research projects and that there is minimal duplication of effort.

A Shared Vision for the Future

A unified approach to philanthropy can help to accelerate progress towards a cure for childhood cancer.

By supporting common goals and priorities, philanthropic organizations can maximize their impact and ensure their contributions are used effectively.

Finally, one novel solution may be to convince these large research institutions with substantial excess reserves to establish a dedicated $100 million pediatric brain tumor fund. This fund could enable scientists to focus on innovative therapies and prevention strategies, bypassing bureaucratic hurdles and traditional research models. This bold idea has the potential to significantly improve outcomes for children battling brain tumors, offering hope where it was once scarce.

We enthusiastically invite philanthropic organizations to join us to accelerate scientific discovery, influence healthcare policies, and uplift families during their most challenging times. We now know that the pediatric cancer researcher community can do it successfully. Together, nonprofits and philanthropists can advance a future where childhood cancer is no longer a mortal threat, but a treatable disease.

Exploring the Power of Non-Toxic Treatments

September is Childhood Cancer Awareness Month, a time to spotlight the tens of thousands of children and families immersed in the devastating reality of this catastrophic disease. And, while traditional treatments like chemotherapy and radiation have increased survival chances for many forms of the disease, there are prevalent, sometimes severe, long-term health concerns that linger long after these kids grow into adulthood. Undeniably, there is a need for safer, more effective options.

Bridge To A Cure Foundation invests in developing nontoxic treatments for pediatric patients, precision medicine powered by AI discovery, and therapies that tap into the body’s systems to fight against childhood cancer.

Angiogenesis: Cutting Off Cancer’s Blood Supply

Of the many promising approaches Bridge To A Cure is funding, angiogenesis is the most exciting. Angiogenesis involves targeting the blood vessels that nourish tumors. Cancer cells are notorious for hijacking the body’s natural process of blood vessel growth to sustain themselves. By disrupting this process, researchers hope to starve tumors and prevent their spread.

Angiogenesis inhibitors are medications that block the signals that encourage blood vessel growth. These drugs can be used alone or in combination with other treatments. While still under development, early studies suggest that angiogenesis inhibitors may have fewer side effects than traditional chemotherapy, making them a more tolerable option for children.

Precision Medicine: Tailoring Treatment to the Individual

Precision medicine, also known as personalized medicine, is a revolutionary approach that aims to tailor treatments to the specific genetic makeup of a patient’s cancer. This approach recognizes that no two cancers are alike; therefore, a one-size-fits-all approach may not be optimal.

AI-powered discovery is playing a crucial role in advancing precision medicine. By analyzing vast amounts of genetic data, AI algorithms can identify unique genetic mutations associated with different types of cancer and what treatments have been shown to work best for a specific mutation. This information can help doctors select each patient’s most effective treatment options.

For example, if a specific genetic mutation drives a child’s cancer, researchers may be able to develop targeted therapies that specifically attack that mutation, minimizing damage to healthy cells. This personalized approach can improve treatment outcomes and reduce side effects.

Immunotherapy: Unleashing the Body’s Inherent Defense

Immunotherapy is another promising avenue for treating childhood cancer. This approach leverages the body’s immune system to fight cancer cells. The immune system is a complex network of cells and proteins that help protect the body from infections and diseases. Unfortunately, cancer cells can sometimes evade the immune system’s detection or even manipulate it to their advantage.

Immunotherapy aims to restore the immune system’s ability to recognize and attack cancer cells. One type of immunotherapy involves antibodies that help activate the immune system’s T-cells, specialized cells that can destroy cancer cells. Another approach involves removing immune cells from the patient’s body, modifying them in the laboratory to make them more effective against cancer, and reintroducing them back into the patient.

While immunotherapy has shown remarkable success in treating certain adult cancers, its application in childhood cancer is still being explored. However, early studies suggest immunotherapy may induce long-lasting remissions or even cures in some children. 

A Brighter Future

The mountain of challenges posed by childhood cancer is indeed steep, but the development of nontoxic treatments offers hope for a brighter future. Angiogenesis, precision medicine powered by AI discovery, and immunotherapy promise to provide safer and more effective options for children faced with this devastating disease.

This latest investment by Bridge To A Cure exemplifies our commitment to collaboration, open science, and strategic partnership to end childhood cancer. With support from people like you, Bridge To A Cure drives significant progress in childhood cancer research by fostering a more united and efficient research community. Our goal of fulfilling the promise starts with accelerating the development of innovative therapies but won’t end until we secure a future where childhood cancer ceases to exist. Together, we are bridging the gap to deliver better treatments and cures.

Bridge To A Cure advocates leveraging technological breakthroughs to end childhood cancers and brain tumors. We invest in various research opportunities, including Artificial Intelligence, data-driven therapies, and advanced imaging. These leading-edge research areas will eventually lead to a breakthrough in treating and inevitably curing these diseases. To that end, how we deliver healthcare is on the cusp of a major transformation. New, data-driven technologies are emerging that unlock the power of multimodal research.

Imagine a doctor diagnosing a patient by looking at X-rays or blood tests and analyzing a rich tapestry of information. This tapestry could include genetic data, electronic health records, wearable sensor readings, and medical imaging from different modalities In cancer research, modalities simply refer to the different tools or approaches scientists use to fight cancer. Imagine a toolbox filled with various instruments for different tasks. Similarly, cancer research has a toolbox filled with modalities for tackling this complex disease. This is the essence of multimodal research – combining data from various sources to create a more complete picture of a patient’s health.

Healthcare professionals rely on multiple data sources to diagnose and manage patients. However, analyzing each data type in-depth requires significant expertise, making it impossible for one person to master everything. This is where AI and machine learning come in. These technologies can seamlessly integrate and analyze data from diverse sources, breaking down data silos and creating robust predictive models. When used responsibly, the insights gained from these models can empower healthcare professionals to deliver even better care.

Unlocking Hidden Connections

Machine learning excels at weaving together data from various modalities, providing a holistic view of a patient’s health. This combined data becomes a powerful tool for extracting complementary information. Think of it like putting together puzzle pieces – each piece offers a glimpse. Still, the complete picture reveals a hidden connection you wouldn’t have seen otherwise. Studies have shown that multimodal data fusion models consistently outperform single-modality models, leading to increased accuracy (by as much as 27.7%) and improved performance.

Oncology: A Leader in Multimodal Research

Oncology, the cancer research and treatment field, is a prime example of how multimodal methods drive progress. Machine learning can be used to find patterns within a large volume of data and predict cell behavior with the aim of improving immunotherapies. Multimodal data can identify risk factors for non-invasive screening and preventive care. Patterns in readily available data can lead to the discovery of biomarkers, aiding in diagnosis, patient risk stratification, and clinical trial selection. Additionally, these models can identify signatures that predict patient response to treatment, allowing for more personalized treatment plans.

Beyond the Individual Patient

The power of multimodal research extends beyond individual patient care. With strict data privacy and security measures in place, this approach can accelerate medical research. Researchers can discover novel biomarkers and therapeutic targets for drug development by analyzing vast amounts of multimodal data. This data can also be used for population health management, providing a comprehensive view of health trends and outcomes across entire communities. The exponential growth of research publications on multimodal oncology data over the past decade underscores the recognition of its immense potential by the scientific and medical communities.

The Future of Healthcare is Multimodal

Leveraging machine learning to analyze the vast diversity of multimodal data is poised to revolutionize healthcare. We’re excited to support these revolutionary research areas through our partner organizations. We believe investing in these research opportunities will help us achieve our goal of reducing the childhood cancer death rate by 50% by 2030. As part of the commitment Bridge To A Cure Foundation is investing in Children’s Brain Tumor Network (CBTN).

This $200,000 grant will help CBTN make an immediate impact on pediatric brain tumor research. By leveraging AI-powered tools and fostering collaboration across leading institutions, and powerful data analysis tools, CBTN is poised to accelerate discoveries, and ultimately, save countless young lives. The future of pediatric brain tumor research is bright, and thanks to this innovative partnership, the fight against these devastating diseases is entering a new and exciting chapter.

5,000 Children Enrolled in the Children’s Brain Tumor Network

Pediatric brain tumors are rare yet devastating, and it is essential to collect tumor tissue to unravel their biology and explore potential therapies. With over 125 types of childhood brain tumors and new subtypes continually being discovered, collecting these tumors for research is crucial. CBTN converts these precious resources into reusable large-scale data, empowering researchers to gain a deeper understanding of these complex diseases.

“The research conducted by the Children’s Brain Tumor Network, of which Bridge To A Cure is part, will influence the development of better treatments and interventions for childhood brain tumors. By leveraging the data and insights gained, clinical trials and drug development can be tailored to individual patients, leading to more effective treatments for our most vulnerable.”- Jena Lilly, CBTN Executive Director of Research Operations and Strategic Planning

At the Bridge To A Cure Foundation, we stand at the intersection of hope and loss, driven by a deep commitment to transforming the landscape of pediatric brain tumor research. Today, we reflect on a momentous milestone achieved by our collaborators at the Children’s Brain Tumor Network (CBTN): the enrollment of over 5,000 children as subjects to donate precious data samples. This landmark accomplishment, unprecedented in its scale, carries deep significance and underscores the urgency of the cause. It’s a revelation that may surprise some: in the pursuit of better treatments and cures, this unprecedented endeavor had not been fully realized until now.

As an organization that intimately understands the devastating impact of pediatric brain tumors, Bridge To A Cure is profoundly grateful for this milestone and the unwavering courage of the children, their families, and our entire network of scientists, researchers, and activists. Together, we forge ahead to find better treatments and cures, fueled by a shared determination and a commitment to honoring the lives of those we have lost to childhood cancer.

This milestone represents a profound partnership that goes beyond numbers. These 5,000 children and their families who have made the decision to share their clinical data and biospecimens to help find cures for other kids like them. Their legacy is our hope, and their resilience inspires us to keep pushing to unite and transform the childhood cancer research community to reduce childhood cancer deaths 50% by 2030.

The Transformative Approach to Childhood Brain Tumor Research

CBTN pairs the collected tissue with clinical data collected over the course of treatment, and, whenever possible, multiple types of molecular data, to create a robust and holistic dataset for researchers. This comprehensive approach allows for significant advancements in our understanding of childhood brain tumors. Recognizing the exponential impact of donated tissue and biospecimens, CBTN stewards the largest collection of childhood brain tumor biospecimens in the world. Moreover, they strive to make all specimens, data, and resources freely accessible to the global community of cancer researchers. This open collaboration and research-sharing model not only accelerates scientific discoveries but also significantly shortens the time required to launch new research projects.

A Call to Unity and Collaboration

At Bridge To A Cure Foundation, we believe progress accelerates through unity. As we observe this milestone, we pause to appreciate the collaborative efforts of CBTN as well as its dozens of partner institutions, hundreds of researchers, and advocates globally who have joined forces to end pediatric brain tumors. We look to the future with confidence and resolution. We envision a day when pediatric brain tumors are no longer a devastating diagnosis, but a treatable – or preventable – condition.

The knowledge gained from the research made possible because of these courageous donors, coupled with the passion and dedication of organizations like Bridge To A Cure, guide us toward that future. By fostering a culture of collaboration and sharing resources, we transform the dreams of children and families into tangible advancements. Furthermore, we commit to leveraging this milestone to bring attention, resources, and support to pediatric brain tumor research.

“We won’t stop. We will do everything in our power to find better therapies and cures through their very precious donation. We’re just not going to stop.” -Jennifer Mason, CBTN Director of Biospecimen and Clinical Research Operations

Bridge To A Cure Foundation and our allies are united in our commitment to honor the lives of the children we have lost and to create a brighter outcome for those still fighting. Together, we can bridge the gap between hope and cures.

You can help at bridgetoacure.org/donate.

A May Brain Tumor Awareness Month Progress Report

In the battle against childhood brain tumors, Bridge To A Cure Foundation has been relentless in its pursuit of progress and hope. May is Brain Tumor Awareness Month, which gives us pause to consider the remarkable milestones met. Read on to explore the Bridge To A Cure journey as we mark our foundation’s sixth May Brain Tumor Awareness Month. It is our steadfast belief that by working together we will experience the first May that brain tumor cures will be celebrated.

UNLEASHING THE POWER OF DATA

In collaboration with the Children’s Brain Tumor Network (CBTN), Bridge To A Cure has spearheaded an extraordinary data-building effort. The scale of childhood brain tumor data has grown exponentially, opening doors to research that was once deemed unattainable. In a single year, CBTN added data from over 8,000 specimen samples and added hundreds of new patient participants. This wealth of information is a beacon of hope for researchers worldwide, propelling their quest to discover effective treatments and cures.

A NEW ERA OF FUNDING SUPPORT

After years of stagnation, pediatric cancer research has received a much-needed boost in government investment. This encouraging shift is a testament to the tireless advocacy of childhood cancer foundations, including Bridge To A Cure and St. Baldrick’s Foundation. While progress has been made, increased funding still falls short of what is necessary to combat childhood brain tumors effectively. Bridge To A Cure Foundation remains resolute in its commitment to lobby for increased investment, as the number one killer of children by disease in the U.S. demands urgent attention.

ACCELERATING RESEARCH: COLLABORATION AND DISCOVERY

The power of collaboration and data sharing has revolutionized the pace of research in critical areas of rare childhood brain tumors. Thanks to the pioneering efforts of CBTN and Bridge To A Cure, breakthroughs have been accelerated by as much as 20 years. This remarkable acceleration underscores the promise of open science and collaboration, not only in the realm of childhood cancer but also in the pursuit of solutions for other devastating diseases. Through their unwavering dedication, researchers are reshaping the landscape of pediatric oncology, offering hope to countless families.

FORGING A GLOBAL NETWORK

The journey towards a cure requires a united front, transcending borders and institutions. Bridge To A Cure Foundation has played a pivotal role in fostering a global collaboration among leading childhood brain tumor research and treatment centers. In the past year alone, six new institutions have joined the network, amplifying the impact of their collective expertise and resources. With 34 member institutions working hand-in-hand, researchers gain a comprehensive understanding of childhood brain tumors, paving the way for discovering more effective therapies. Together, they form an unstoppable force for progress.

POWERING UP THE PROMISE OF AI

Artificial intelligence (AI) is grabbing headlines these days. Essentially, AI enables the completion of complicated tasks using powerful, advanced computing technology. In the children’s cancer research space, it’s arguably become the biggest buzzword of the year for good reason. Because of the tremendous efforts of many in the Bridge To A Cure Foundation network, progress is picking up pace in terms of:

• Near-automatic detection of brain tumors on MRI scans
• Providing subtype predictions that can lead to faster, more accurate diagnoses
• Helping doctors identify the best treatment options for each child
• Assisting in detecting disease progression

Our collaborators at CBTN, powered by the Center for Data-Driven Discovery in Biomedicine (D3b) at the Children’s Hospital of Philadelphia, have partnered with Amazon Webs Services (AWS) to find new ways to use the power of high-powered, cloud-based computing and CBTN data and resources to impact the way healthcare is delivered, managed, and accessed for children with brain tumors.

To dive deeper into how AI promises to bring more effective treatments and cures to childhood cancer patients, read our February article, “Artificial Intelligence Offers Massive Potential for Progress.”

SHINING A SPOTLIGHT ON SCIENTIFIC BREAKTHROUGHS

While strides have been made in treating certain childhood cancers, many deadly forms, including the 30 known types of pediatric brain and central nervous system cancers, still lack effective treatments. Bridge To A Cure Foundation shines a spotlight on these scientific challenges, highlighting the urgent need for innovative solutions. By addressing the long-term side effects of current treatments and driving research into novel therapies, Bridge To A Cure remains unyielding in their commitment to saving young lives.

This May Brain Tumor Awareness Month is marked by significant progress, hope, and unwavering commitment at Bridge To A Cure Foundation. Through a data-driven approach, increased funding support, collaborative research acceleration, global network adoption, and a focus on scientific breakthroughs, we are closer to a future where childhood brain tumors are no longer a devastating reality. However, the journey is far from over.

This month, you are called upon to join Bridge To A Cure Foundation in our mission. Together, we can make a life-altering impact in the lives of thousands of children and families affected by brain tumors. Let us stand united in support; providing hope, healing, and a brighter future for generations to come. Together, we can accelerate breakthroughs and build bridges to cures for childhood brain tumors.

The Childhood Cancer Data Initiative (CCDI) is one of the largest childhood cancer research initiatives to date—and will change outcomes for children for the better — forever.

A key Bridge To A Cure commitment continues to be in service to other initiatives, foundations, and organizations that prioritize progress toward cures over the siloed approach traditionally found in children’s medical research. Some of our dedicated, tireless partners such as the Children’s Brain Tumor Network (CBTN) and St. Baldrick’s Foundation continue to set examples for how researchers, clinicians, and foundations in the pediatric brain tumor space should work and engage. But, even with the efforts of these extraordinary organizations, we need all hands on deck to finally reach the major breakthroughs that can save kids’ lives.

An ambitious effort called the Childhood Cancer Data Initiative (CCDI) established by the National Cancer Institute has brought focus to the nation’s childhood cancer realm. This initiative has received $50 million per year in federal investment since its creation in 2020 and will be funded at that level for a decade. To improve treatments, build a strong database, and bring the childhood cancer community together, the CCDI breaks the mold of ego-driven research by incentivizing collaboration among everyone in the childhood cancer realm. And Bridge To A Cure coalition member CBTN is helping by providing expertise and infrastructure to this massive undertaking.

Two Years of Tremendous Strides

Although the work is far from over, the CCDI has made great progress in its goal of gathering and sharing data to allow for faster progress in childhood cancer treatments.

The initiative focuses on three main goals that align with Bridge To A Cure Foundation’s key imperatives. We applaud CCDI program focus and prioritization.

CCDI goals include:

• Gathering data. Every child receives a diagnosis, no matter where they are from or where they receive care.
• Speed diagnosis. Use clinical and molecular characterization to help inform treatments for our most vulnerable cancer patients.
• Bring clinical care and research data together. This will speed up improvements in preventative care, treatment, and quality of life for children suffering from cancer.

These are honorable goals. Let’s look at what the CCDI has accomplished recently because of these goals.

The CCDI Data Ecosystem

The first phase in the CCDI timeline focuses on developing a data ecosystem that includes a registry that can link patient data, which leads to tracking and informing current treatment options. Furthermore, systems could be put in place to simplify and automate data collection. With this foundation in place, technological tools can be developed which would make possible the interpretation of diagnostics imaging and prior patient reports. 

One of the major tasks pediatric cancer researchers has to harmonize medical terminology and jargon. As it stands, disparate systems use their own acronyms and terminology, making it difficult for different data houses to communicate effectively. This is a barrier to effective research. With the work of CCDI, the possibility of a more universal model for a harmonized language becomes possible.

Generation of Childhood Cancer Data

Further expanding on the inherent goals of the CCDI, the initiative isn’t siloed or closed off. In fact, CCDI encourages participation from any health institution that is conducting childhood cancer research. On top of that, the organization supports funding organizations that also share data and contribute to the overall data ecosystem. 

Another initiative—the Molecular Characterization Initiative (MCI)—is the national collaboration of the childhood cancer research community that assists in speeding up a diagnosis of cancer in children. That means patients are able to get the best treatments more quickly. Through MCI and the CCDI, the standard of care we all hope to see improve, can—by creating a comprehensive way to characterize rare and hard-to-treat variants for every single child suffering from a cancer diagnosis.

What We Are Learning

To develop better treatments for the thousands of children and their families who battle for their lives against an often deadly disease, a robust and complete data system is necessary. Bridge To A Cure Foundation honors those who are breaking the norms of the ineffective traditional approach to childhood brain cancer research. It is through initiatives like the CCDI that we will see improved outcomes for children in our lifetimes. 

The CCDI is slated to grow and evolve its programs over time, remaining committed to the goals it holds. To learn more about CCDI progress, see their presentation from the recent joint meeting of the NCI National Cancer Advisory Board and the NCI Board of Scientific Advisors.

Often our fiercest advocates, there are several ways that these brave change-makers advance progress.

Bridge To A Cure Foundation was established to find cures for childhood cancer after the devastating loss of founder Bob Martin’s granddaughter Clara to a brain tumor in 2017. It was the Martin family’s hope that other children with cancer wouldn’t have to suffer the way she did. Thousands of families like Bob’s are facing a horrific journey after a childhood brain tumor diagnosis. Fueled by their pain and anger, patient families sometimes become some of the fiercest advocates for childhood cancer research.

There’s a common thread that bridges us all together to save lives.

Family-run foundations are at the heart of finding cures to childhood brain cancer. Each foundation shows up in different ways. Through different initiatives, powerful partnerships can grow. Because, although we might have different mission statements, we all agree on one thing: no child or family should suffer from this devastating disease ever again.

Foundations make a huge impact when it comes to childhood cancer research. Impacts such as:

Creating legacies. Behind every piece of data collected is a child. This is something that Swifty Foundation understands to their core. After their son Michael was diagnosed with a rare form of brain cancer, he developed his Master Plan to find cures — a plan that his family continues to pursue today. By nurturing relationships, hammering out logistics, and developing workflows, Gift from a Child was born. This program includes six Centers of Excellence who have been a part of developing pre-clinical models of the disease. The gifts of tumor tissue is processed at Bridge To A Cure Foundation collaborator Children’s Brain Tumor Network (CBTN). These gifts of tumor tissue allow these precious children to leave a legacy and enable a bit of peace during what is a difficult time for those facing a dangerous diagnosis.

Legislative action. Through the Gabriella Miller Kids First Research Act, over $88 million has been raised for childhood research. This Act was bound to do big things since it was named for an amazing childhood cancer patient and advocate, Gabriella Miller. This momentous initiative is the legacy that Gabriella’s parents built after her heartbreaking passing at age 11. Now, we’ve teamed up with Gabriella’s mother, Ellyn Miller, to fight for the passing of Gabriella Miller Kids First Research Act 2.0, a bill that generates new funds for childhood cancer research—a bill that doesn’t cost taxpayers a penny and will never sunset. Instead, fines from companies that break the law would be channeled directly to critical medical research. You can learn about how Bridge To A Cure is supporting the amazing Kids First 2.0 initiative here.

Enlisting scientific collaborators to accelerate breakthroughs. With a 37-state reach and a self-described “loud voice,” Kim MacNeill of the Ross K MacNeill Foundation has been a force for collaboration and open-access when it comes to medical research, particularly for pediatric brain cancer. After the tragic loss of her son Ross to a form of brain cancer, Kim was set on doing absolutely everything in her power to make sure future children and parents didn’t have to go through what They went through. The Ross K MacNeill Foundation research investments focus on those who prioritize a patient-first approach. They have supported CBTN and their open-access model and been a part of amazing new research initiative such as a phase 1 vaccine trial that will help the body’s immune system to fight against tumor growth or occurrence. On top of this, Kim advocates to other researchers and stakeholders to “buy-in” to the CBTN model, so that other breakthrough projects can happen.

Pushing big data for bigger discoveries. In partnership with CBTN, Amanda Haddock and her team at Dragon Master Foundation work to develop and expand CAVATICA; a free, open access research platform that enables doctors and scientists to easily share, search, and analyze large collections of patient data. The Haddock family discovered that many researchers they consulted during their teen son David’s brain tumor journey could not access enough information necessary to provide the best treatment options. Sadly, David passed away after a 20-month fight, but it was his wish that other kids be spared the devastation of this disease. Like Bridge To A Cure Foundation, they’ve been at the forefront of driving data sharing and research collaboration.

Bridge To A Cure is honored to partner with such amazing foundations and families. Like us, they know loss, heartache, and what it means to want to fight back against pediatric brain tumors. Like them, Bridge To A Cure disrupts the status quo as we build bridges that can restore hope to hundreds of thousands of families devastated by childhood cancer.

Coming Together To Find Cures

Foundation president Robert Martin sits on the CBTN Executive Board to help direct its vision and priorities. In addition, Bridge To A Cure Foundation actively participates in the CBTN Executive Council—and now integrates a new, collaborative effort of dedicating our time and talent to supporting the amazing work being done by the Network. These aligned family foundations, which are often the fiercest advocates in children’s brain cancer research, also sit on the organization’s executive council. Together, the CBTN executive council has raised millions of dollars for research. We make vital connections, pave the way for legislative change, push technological innovation in healthcare, and contribute to the most impactful breakthroughs towards cures for childhood brain cancer in over 40 years. This is just the beginning.

Even though childhood brain cancer is the most deadly form of cancer in children, it is one of the least funded in cancer research, period. Through meaningful partnerships between the Children’s Brain Tumor Network, Bridge To A Cure Foundation, and other amazing foundations like the four mentioned here, big things are happening.

Let us never forget what was lost—and show gratitude for the efforts of these initiatives so that, in the near future, children no longer have to suffer. Through the collaborative efforts of CBTN and dedicated family-led foundations, we will cut the childhood cancer death rate 50% by 2030.

To this end, we’ve created a new Bridge To A Cure-CBTN Fun. Donate to help the Bridge To A Cure Foundation coalition here.

Initiative to build an exhaustive, accessible brain tumor database gains buy-in from leading pediatric cancer players.

Brain and central nervous system tumors are the deadliest forms of childhood cancer, and the #1 killer by disease of kids in the U.S. Yet there has never been a single drug developed to stop these malignant tumors from taking children’s lives.

For this reason, Bridge To A Cure Foundation is focused on removing key barriers that stand in the way of curing childhood brain cancer. At this year’s halfway point we want to update our supporters on the tremendous progress being made toward a 50% reduction in deaths due to childhood cancer by 2030.

Our 2021 strategic imperatives include:

• Development of an accessible, robust childhood cancer database;
• Establishment of a clinical trial process/protocol designed for children; and,
• Initiation of new approaches to fund childhood cancer research.

Creating a database that contains everything we need to fight childhood brain cancers is our top priority this year.

We’re driving advancement toward building a database that will contain everything we know and need to develop the treatments that successfully fight brain tumors. To this end, we’re relentlessly pushing forward on these key fronts:

Partnership Funding & Counsel

• Pediatric Cancer Database Commons (PCDC): Bridge to A Cure Foundation granted PCDC $50,000 to accelerate the completion of a childhood brain tumor dictionary that gives the scientists, researchers, and oncologists a single, unified vocabulary worldwide for recording and interpreting data.
• Children’s Brain Tumor Network (CBTN): CBTN is a model for the national childhood cancer database Bridge To A Cure is advocating to make a reality. This repository houses more than 50,000 childhood brain tumor samples, making it the country’s largest of its kind. With these records they compile high quality data and make the information available to any researcher worldwide who requests it. Bridge To A Cure is a member of the CBTN Executive Council, helping to push for institutional buy-in and peer foundation support. In June, Bridge To A Cure Foundation provided a
• St. Baldrick’s Foundation: In June, Bridge To A Cure Founder and President Robert Martin joined the board of directors of St. Baldrick’s Foundation, the largest non-government funder ofchildhood cancer research grants. Bridge To A Cure Foundation pitched in $10,000 toward the more than $310 million St. Baldrick’s has raised to fund 1,620 research grants at more than 379 in 29 countries. It is the goal of Bridge To A Cure to influence this important funding organization to support not only research projects, but also development of a robust, unified database from which all researchers can draw.

Resource Building

As Bridge To A Cure Foundation continues to become more invested with these key partners and the childhood cancer community, it has become imperative to develop relationships to fill resource gaps with best-in-class consultants and professional service providers.

Bridge To A Cure has reached its first such agreement with Kirkland & Ellis, one of the world’s largest law firms, to provide pro bono counsel related to the building of a national childhood cancer database. Discussions are underway to secure proven consultants with strategic planning, database monetization, and communications expertise.

Advocacy

• During Brain Tumor Awareness Month in May, we outlined our plan to improve data collection, storage, and access in collaboration with the groups mentioned above, with the goal of eradicating brain tumors in children.
• Gabriella Miller Kids First 2.0 Act: We’re calling on Congress to pass the Gabriella Miller Kids First 2.0 Act, which would fund childhood cancer and disease research in perpetuity without relying on taxpayer dollars. It’s common-sense legislation that can save thousands of lives. To learn more and add your voice to the call on Congress, click here.
• National Cancer Institute: We continue to push for the National Cancer Institute’s Childhood Cancer Data Initiativeto fund consolidation and expansion of childhood brain tumor data to develop a model that can be used for all childhood cancers.
• Database Consortia: There are currently three consortia that have built their own unique databases for pediatric brain tumors: Children’s Brain Tumor Network, Pediatric Brain Tumor Consortium(PBTC) and Pacific Pediatric Neuro-Oncology Consortium(PNOC). Bridge To A Cure is uniquely positioned to work all three groups to achieve our goal of consolidating these three distinct databases into one.

By harmonizing existing clinical research data and leading international efforts to standardize data collection, we’re breaking down long-standing barriers that have held back advancements in research on rare childhood diseases. We also eliminate waste and duplication as we streamline research toward a cure.

Our commitment to creating new efficiencies in children’s brain tumor research extends to our own operations. Bridge To A Cure Foundation is building relationships to supplement resources in areas where we need support, such as contracting pro bono legal support and strategic planning services.

We need your continued support as we continue to leverage our resources toward a bold goal: to unify and transform the pediatric cancer community to reduce childhood cancer deaths 50% by 2030. Please join our momentum to dismantle the barriers that have left children and their families without hope for too long.