WINSTON ELY

Originally published by PR Newswire, November 20, 2025.

Bridge To A Cure Foundation announces the appointment of Winston Ely to its Board of Directors. Ely, a Brooklyn-based designer and developer, brings more than 30 years of experience in architecture, sustainable design, and community-focused development.

Ely is the Owner and Creative Director of WE Design and Founder of WE Develop, where he leads residential and mixed-use projects with an emphasis on thoughtful planning and environmental responsibility. He also serves as a Green Infrastructure Fellow for the Design Trust for Public Space, contributing expertise to efforts focused on improving stormwater management and water quality across New York City.

Ely’s appointment to the organization’s Board of Directors carries personal meaning. Bridge To A Cure Foundation was established in memory of his daughter, Clara Ely, whose life continues to inspire the organization’s mission to accelerate progress in childhood cancer research through data integration, collaboration, and innovation.

“Winston brings valuable perspective as both a parent and an experienced leader in systems-based problem-solving,” said Bob Martin, Founder and Chair of Bridge To A Cure Foundation. “His insight will support our efforts to expand collaboration and strengthen the infrastructure needed to advance more effective pediatric brain cancer research.”

As a member of the Board, Ely will support strategic planning and governance efforts that align with the foundation’s focus on driving scientific collaboration and improving outcomes for children facing brain cancer.

“I am honored to join the Board of Bridge To A Cure Foundation in Clara’s memory,” shared Ely. “I look forward to contributing to efforts that connect people, data, and ideas to help accelerate meaningful progress for children and families affected by cancer.”

Ely resides in Brooklyn with his wife, Tricia Martin, and their children, Keira and Yeimer. He holds a BA in Art and Environmental Design from the University of Vermont and a Master’s in Architecture from the University of Oregon.

About Bridge To A Cure Foundation

Bridge To A Cure Foundation is accelerating the pace of childhood cancer research by championing data integration, collaboration, and innovation. By breaking down silos and investing in platforms that connect researchers, clinicians, and families, the foundation strives to ensure that every child and family can benefit from the full power of science, technology, and shared knowledge. To learn more, visit BridgeToACure.org.

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.

In 2024, Bridge To A Cure Foundation turned turbulence into progress. What began as a stormy forecast for childhood cancer research ended with clear signs of brighter days ahead, thanks to a community determined to improve outcomes for kids everywhere.

A Year Defined by Progress

Last year marked critical milestones in Bridge To A Cure’s plan to reduce pediatric brain cancer 50% by 2030.

• Fueled Innovation: We helped advance the M³ scientific approach, integrating multidisciplinary expertise, multiomics data, and multimodal insights to accelerate breakthroughs to cures and cultivate more personalized therapies.
• Expanded Data Access: Our support enabled more than 800 new tissue samples to be processed for the Pediatric Brain Tumor Atlas, now housed in the NIH-funded Kids First Data Resource Center, where it powers discovery alongside 35 other pediatric and rare disease datasets.
• Drove AI-Powered Breakthroughs: Through collaborations like the $10 million ARPA-H RADIANT project, we laid the groundwork for real-time clinical data integration—an innovation that promises to unlock faster, better-informed treatments tailored to each child.
• Catalyzed Safer Therapies: Strategic funding advanced studies in immunotherapy, apoptosis, and angiogenesis—pioneering new ways to fight tumors without devastating side effects.

These aren’t just research terms—they represent real hope for children and families who deserve a future beyond the shadow of cancer.

Robert Martin, Founder and President of Bridge To A Cure Foundation, reflects on this incredible year of progress:

“Our journey began with a promise—one born from love, forged through loss, and carried forward by hope. What started as a vow to one child has become a mission for all: to reduce childhood cancer deaths by 50% by 2030. Together, we are turning storms into sunshine for children everywhere.”

Why It Matters

The truth remains stark: childhood cancer is the leading cause of disease-related death in kids, and most treatments are decades old. But 2024 proved something powerful: collaboration works, data saves lives, and innovation accelerates cures.

The Forecast for 2025: Bold and Clear

Our mission is unwavering: unite and transform the childhood cancer research community to reduce deaths by 50% by 2030. To get there, 2025 is a year of bold initiatives:

• Strengthening Global Data Ecosystems: Invest in platforms that equip researchers across institutions and borders.
• Expanding AI Capabilities: Build AI-powered analytics tools that turn complex data into actionable treatments faster than ever.
• Championing Policy for Progress: Advocate for legislation that sustains research funding and removes barriers to discovery.
• Mobilize the Bridge To A Cure Movement: Engage with families, peer foundations, and industry partners to eliminate silos and amplify impact.

The clouds are breaking, but the work is far from done. Together, we can turn today’s breakthroughs into tomorrow’s cures.

What keeps Bridge To A Cure pushing ahead in 2025? We’re simply Fulfilling the Promise made. You can help us keep our commitment to families facing the devastating effects of brain tumors. Read our 2024 Annual Report. Share our mission. Give to fuel breakthroughs that will save our kids.

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.

The nonprofit sector in the United States boasts a staggering number of over 1,540,000 organizations, each dedicated to various causes. But not all nonprofits are equal. The disparate nonprofit landscape underscores the challenges for small nonprofits: only 3% generate revenue above $5 million. These nonprofits are large national institutions, many with revenue in the billions, and with tremendous influence. Most of the remaining 97% raise less than $99,000 a year.

Why Smaller Foundations Fail

While size is one reason many nonprofits struggle to achieve meaningful impact there are other perhaps more important reasons. The challenges that plague the sector, and why a substantial portion of these organizations are not effective are attributed to operational shortfalls and inapt strategies.

Operational Shortfalls

Most nonprofits are started by someone touched by a personal tragedy or motivated by an injustice. While their hearts are in the right place, their skill set may not provide what is necessary to build, operate, and grow the organization in a way required to be successful. Effective leaders are visionary, focused, and create a culture of innovation: important attributes to be successful. Conversely, inexperienced or unqualified leadership can drive a nonprofit into trouble from the outset.

Many smaller nonprofits lack the knowledge or funding to integrate efficient technology solutions into internal workflows, fundraising, communications, and finance operations. As a result, they don’t have the time to focus on the initiatives that help them achieve meaningful progress. Further, those foundations focused on medical cures should include machine learning (AI) as a core element of their discovery process. Very few have this capability or are considering it, leading to a failure to optimize operations.

Inapt Strategies

Unfortunately, many smaller nonprofits have not taken the time to develop a mission statement, or they’ve drafted amission that is not audacious or measurable. One of the primary issues facing nonprofits is the lack of clear challenging goals and measurable outcomes. Without well-defined objectives, organizations often find themselves adrift, unable to demonstrate tangible results to their stakeholders. Additionally, an overemphasis on fundraising can divert attention from the core mission, turning nonprofits into entities more focused on sustaining themselves than effecting change.

Further, there is prevalent absence of collaboration and partnerships. All nonprofits should collaborate and build meaningful partnerships that place the goal ahead of the institution’s drive for recognition. This is as true for the 3% of the largest nonprofits as it is for the 97% that are minimally funded. No matter the size, it should be a strategic imperative for nonprofits. Sadly, it is not. For smaller nonprofits, they become burdened with excessive overhead and have zero influence. While the founders and supporters feel good about what they advocate, they achieve little.

As a result of operating shortfalls and inapt strategies, combined with the larger nonprofits dominating the nonprofit community, half of the smaller nonprofits fail, and those that survive have minimal impact, if any.

Why Bridge To A Cure Has Flourished

The progress highlighted in our  2022 annual report  took many by surprise; we welcomed the accolades. Accompanying the accolades were often followed with the same question: Given Bridge To A Cure’s modest revenue stream, how has it been able to help propel advancements in pediatric cancer, specifically childhood brain tumor cancer? Or how is it that the Bridge to a Cure Foundation is dramatically overperforming versus the status quo?

Simply, Bridge To A Cure excels at each of the operational and strategic imperatives identified above.

Operational Excellence

Bridge To A Cure Foundation has been built by qualified personnel: seasoned leadership, board of directors members, and advisors from industry and childhood cancer research with a track record of success. Bridge To A Cure executives apply years of experience competing, developing strategic advantages, optimizing resources, creating cultures of innovation, building strategic partnerships, responding quickly to challenges and opportunities.

Robust technology also is crucial to Bridge To A Cure success. We use multiple cloud-based applications to manage what is “backroom” operations: finances, fundraising, communications, and market research. This allows us to focus on building partnerships that will advance our mission and influence key decision-makers to drive the change needed to transform the childhood cancer community’s approach to research.

Effective Strategies

Our mission inspires us emotionally and creatively, it serves as a guideline for collaborating and partnering with like-minded organizations and targeting the right audience for support. Our strategies rely on strong strategic partnerships, with the goal of getting the right data and the right technology in the right hands. And, we are focused, we will cure childhood brain tumor cancer.

We have a mission that is audacious and measurable: To unite and transform the childhood cancer community’s approach to research with the goal of cutting childhood cancer death rate 50% by 2030.

Collaboration and strategic partnerships have been strategic imperatives since the begging. Today, we collaborate with over 20 other childhood brain tumor cancer nonprofits and several of the largest nonprofit institutions, including a partnership with the largest childhood brain tumor organization in the world. We have attracted board of director members and board of advisors that are leaders in industry and childhood cancer research. We have the loyal support of 400 donors and over 2,000 followers that are champions of our mission and appreciative our progress.

In our determination to end childhood cancer, Bridge To A Cure Foundation, in collaboration with its partners, has made remarkable advancements this past year. Through a multifaceted approach that emphasizes collaboration, open science, and the application of groundbreaking technologies, the foundation has brought together well-positioned individuals, forged vital partnerships, harnessed the power of data-driven research, and achieved transformative breakthroughs. These accomplishments have improved patient care and treatment outcomes and propelled advancements in the broader healthcare research field.

Exponential Impact in 2023

While a $250,000 foundation might seem modest, Bridge To A Cure has exponentially multiplied our impact in 2023 by targeting research and nonprofit organizations that share our mission and have the scientific resources and government influence to achieve it. And, we contributed strategic planning and communication skills found at senior executive levels within the business community. Over the past few years, these targeted organizations have come to rely on us to play this role. In doing so, Bridge To A Cure has become a crucial player in the childhood cancer research landscape, facilitating progress far beyond its financial size.

Empowering Key Individuals

The foundation supported our former executive director, Wendy Payton, as she transitioned to an executive role at the Children’s Brain Tumor Network (CBTN). Bridge To A Cure Foundation plays an active role at CBTN as an Executive Council member. In addition, Foundation president Robert Martin sits on its Executive Committee. Wendy’s transition to CBTN further enhances the foundation’s impact of bringing its vision and strategic objectives to a wider audience within the CBTN, fostering collaboration and pushing for progress. Wendy continues her involvement with Bridge To A Cure as a member of our board of directors.

In addition, we welcomed new board member Nan Smith, who contributes valued perspectives from her expertise as a cancer patient advocate and research patron. Smith brings fundraising acumen built over 30 years of philanthropic projects, including the Hackers for Hope charity golf tournament, which raised over $20 million for cancer research programs. Her experience includes leadership positions at innovative nonprofit organizations Americares and Changing Our World. The addition of Nan to the board amplifies the caliber and expertise inherent within Bridge To A Cure Foundation leadership.

Strengthening Partnerships

CBTN expanded our reach in 2023 by welcoming two new pediatric healthcare member institutions, Children’s Healthcare of Atlanta and Maria Fareri Children’s Hospital, part of the Westchester Medical Center Health Network. And, CBTN is working to align with six additional institutions in the onboarding stage of membership. This exponential growth signifies the increasing recognition of the collaborative model and the trust bestowed upon CBTN to drive this strategy.

This year we marked the milestone of 5,000 child patient enrollees into CBTN, accompanied by the additional participation of now over 2,500 family members. Such levels of engagement have fortified the CBTN with an extensive dataset crucial for researchers across the globe. We do not celebrate this achievement because it means we have not yet accomplished our mission. But we honor these courageous children and families for their belief that what we are all doing together will help us end childhood cancer once and for all. Through this collective effort, Bridge To A Cure is helping to revolutionize childhood cancer research and providing researchers with the tools they need to advance progress.

Additionally, a significant milestone was achieved through a partnership forged between CBTN and Amazon Web Services (AWS) to drive AI innovation in patient care. Leveraging AWS’s cutting-edge technologies, the world’s largest data repository of its kind at CBTN, this powerful collaboration is working to develop individualized treatment protocols for doctors and their patients while empowering scientists and researchers worldwide with new cloud-based tools for data-driven discovery.

Harnessing Technological Expertise

Recognizing the potential of cloud-based computing and artificial intelligence (AI), the experts within the CBTN network have applied these technologies to not only drive childhood cancer research but also revolutionize broader healthcare research. By leveraging the power of AI and cloud computing, researchers are unlocking new insights into disease mechanisms, genetic variations, and potential treatment pathways. This interdisciplinary synergy is poised to deliver transformative outcomes in the quest for cures.

Influential Voices in Research

CBTN’s Co-Executive Director, Dr. Adam Resnick, has emerged as a prominent figure in data-driven bioscience discovery. He regularly makes appearances at patient advocacy and scientific conferences, including participation in the White House Cancer Moonshot gathering this past fall. His colleague Dr. Allison Heath, CBTN Director of Data Technology and Innovation, and others from CBTN also led engaging and thought-provoking presentations within the scientific research community this past year. This included participation in a prominent panel discussion at the AWS Summit in Washington, D.C. in September, where she joined leaders from AWS, the NIH National Cancer Institute, and the White House Cancer Moonshot. These discussions gained significant traction around the topics of how cloud-based open science research models are eliminating silos and allowing scientists across the globe to analyze – in real-time – medical records and other data to accelerate research and aid in the development of new therapies.

Transformational Research Progress

Significant progress has been made through transformative research initiatives in various domains. Notably, an imaging study utilizing AI has provided three-dimensional tumor images, aiding in the detection of tumor changes faster than traditional radiology methods alone. This breakthrough expedites diagnosis and treatment decisions, resulting in improved patient outcomes as timely and accurate interventions become possible. It signifies a pivotal step towards personalized, effective treatments and realizing the foundation’s overarching goals. It’s just a glimpse of what is possible through AI technology and open science.

In its collaborative efforts, Bridge To A Cure Foundation has delivered remarkable achievements in 2023, vastly outperforming what many thought possible for a smaller foundation such as ours. The alignment of key individuals, strengthening partnerships, technological advancements, amplification of influential voices, and transformational research breakthroughs reflect the foundation’s unwavering commitment to driving cures for children with cancer as we move forward into 2024.

And just as Bridge To A Cure could not make these advancements alone, neither could we continue to operate without the giving and advocacy of our friends and donors. It takes all of us doing our part, and we are so grateful for your support and encouragement over the past 6 years. Through the application of cutting-edge technologies and the global collaboration facilitated by Bridge To A Cure Foundation initiatives and upheld by you, hope shines brighter than ever for the future of childhood cancer research and beyond.

Innovative approaches are crucial for the effective management and treatment of childhood cancer, yet traditional research methods often fail to address the complexities of these diseases. However, through multidisciplinary research and collaborative efforts, promising avenues for advancing childhood cancer research have emerged.

Challenges and Effective Research Emergence

The landscape of childhood cancer research has long been characterized by researchers working independently, leading to fragmented insights and missed opportunities for breakthroughs. Recognizing this, the Bridge To A Cure Foundation has championed collaborative approaches to bridge these gaps. By bringing together experts from various disciplines, the foundation aims to overcome the limitations of traditional methodologies and propel the field of childhood oncology forward.

Leveraging Collaborative Data

Central to the success of collaborative efforts is the robust data infrastructure managed by the Children’s Brain Tumor Network (CBTN) and supported by the Bridge To A Cure Foundation. This comprehensive data ecosystem serves as a repository of valuable information, enabling researchers to explore new avenues of inquiry and uncover insights into the biology of childhood cancers. Without this wealth of data and specimens available, accelerating treatments for children with cancer would be hindered.

“Integration of diverse expertise, alignment of research priorities, and innovation in methodologies are our guiding principles.” —Mateusz Koptyra, CBTN Lab Director and founding partner for the collaborative effort

By integrating data from diverse omics disciplines such as genomics (study of all the genes in a person), proteomics (study of all the proteins in a person), transcriptomics (study of all the RNA molecules produced by a person), metabolomics (study of all the small molecules, or metabolites, in a person), and epigenomics (study of chemical modifications to DNA and proteins that can influence gene activity), researchers can gain a more comprehensive understanding of childhood cancers. This holistic approach allows for the identification of complex patterns and interactions, leading to the discovery of potential therapeutic targets. The Bridge To A Cure Foundation emphasizes the importance of such multidisciplinary exploration in driving forward the fight against childhood cancer.

Examples of Success and Initiatives

Within the collaborative framework supported by the Bridge To A Cure Foundation, ongoing projects focus on molecular diagnosis of childhood cancers and the development of targeted therapies tailored to specific genetic profiles. By sorting tumors based on their DNA characteristics, researchers can personalize treatment approaches, which maximize efficacy and minimize adverse effects. These initiatives highlight the tangible impact of collaborative efforts in improving outcomes for children with cancer.

One such effort was presented by Anahita Fathi Kazerooni, a research instructor in the Translational Research Imaging Unit of the Center for Data Driven Discovery in Biomedicine (D3b) and the Division of Neurosurgery at Children’s Hospital of Philadelphia (CHOP). Her groundbreaking research, showcased in her award-winning poster at the 2023 Society for Neuro-Oncology Annual Meeting, is a testament to the power of multiomic approaches. Her study, which integrated data from multiple research fields, revealed new diagnostics and therapeutic targets for pediatric brain tumors.

A Commitment to Children and Families

Looking ahead, Bridge To A Cure Foundation remains committed to driving innovation and collaboration in childhood cancer research. Emerging technologies, such as artificial intelligence and machine learning, hold promise for accelerating data analysis and uncovering novel insights. However, the foundation’s core mission remains unchanged—to improve outcomes for children and families affected by childhood cancer. By harnessing the collective expertise of researchers and clinicians, the foundation aims to continue pushing the boundaries of knowledge and making meaningful strides toward cures.

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.

The Promise of Project Accelerate

Children’s Brain Tumor Network (CBTN) houses the largest childhood brain tumor biorepository in the world: 2,000 data sets for rare but deadly forms of pediatric brain tumors – of which there are more than 30 types and hundreds of subtypes.

Bridge To A Cure Foundation has partnered with CBTN to make more people aware that the more data available, the more breakthroughs will be made. And, we have some exciting news to share! Beginning in late September, researchers will be able to access 8,400 new data sets collected from 31 institutional sites worldwide and processed at the Broad Institute, a partnership between Harvard University and Massachusetts Institute of Technology (MIT).

Project Accelerate researchers are focusing on the most aggressive types of childhood brain tumors, while also looking for discoveries for the rarest forms of the disease. CBTN will be making this flood of new information freely available to researchers all over the world, and the impact promises to be huge. Researchers will have access to so much more information to get one step closer to a cure for childhood brain tumors!

Childhood Brain Tumor Discovery

Discoveries in the area of brain tumors can’t be made by just one person. The Children’s Brain Tumor Network (CBTN) is a great resource for scientists since it is made up of 31 member institutions across the world that are working for the same goal: No child dies or suffers from a brain tumor. This network of researchers, clinicians, patients, and foundations are unified around this mission. They share data, resources, and expertise to make discoveries. Because of internet cloud storage, CBTN information can be easily accessed by researchers and scientists all over the world. This improves collaboration and takes away the barriers that were once a big part of the research.

The Role of the Young Investigator

Young investigators are essential in research, and they are the next generation of principal researchers. We need to make sure they feel supported and have access to the necessary help to guide them towards the cure of brain tumors. Bridge To A Cure Foundation believes that the secret to better treatments and cures for childhood brain tumors will be found in the CBTN data. By collaborating with young investigators and others who use this data, we can accelerate the pace of finding a cure.

A young investigator is someone who has just finished their Ph.D. degree and would like to work on a research project independently. They can also be young scientists who might have post-doctoral experience and want to explore a specific topic to learn more about it, or search for a discovery they are hoping to make.

The beauty of a young investigator is the drive and the desire to find out the answers to the questions they are passionate about. Research can be tedious and even discouraging. It is challenging, but if there is mentoring, collaborating, and talking to people who may disagree with the young investigator, the research can take an exciting turn and areas may open up that were never thought about before. In the end, this can lead to a new discovery that was never an option or thought previously.

The young investigator uses CBTN data in their own individual projects and this helps them get even closer to understanding how to treat childhood brain tumors brain tumors. Additionally, there are specimen data along with biosamples that can provide the young investigator with more of an understanding of a brain tumor subtype and possibly a breakthrough in treatment. Some of the data come from patient visits, MRI scans, data from stained slides of tissue, and genomic data. Since there is not enough data collected from any single research center, collaboration between many researchers is important. CBTN encourages young investigators and other researchers around the world to share their findings to help inform future research projects, no matter where that research is being conducted.

CBTN’s Project Accelerate will greatly advance the work of young investigators by flooding the new data into what is already the world’s largest repository of childhood brain tumor samples for pediatric cancer research projects. It is important to CBTN to make sure that the help is there for the critical research and development of more effective treatments for tumors of the brain and central nervous system.

Please give today to help fund Project Accelerate.

NOTE: Exciting announcement about Bridge To A Cure Foundation and the Children’s Brain Tumor Network to follow soon. Keep an eye out for news about an important development.

There’s never been a single drug developed for the number one killer of children. This must change now – Enough is Enough!

How is it possible that there hasn’t been one drug developed for the number one killer of children – brain tumors? It’s not because we don’t have the best minds dedicated to finding a cure – we do. No, it’s because these great minds don’t have access to the critical data essential to discovery. At Bridge To A Cure we are working to change that.

Here’s how. There are three components to make critical data available:

• Data collection
• Data storage
• Data access

In this month’s blog, we’ll address Data Collection. Bridge To A Cure is working to establish what data needs to be collected and in what format. The Pediatric Cancer Data Commons (PCDC) is one of the most important organizations working toward Bridge To A Cure’s goal to build a robust database to help beat childhood cancer. Through this effort, we’re creating a data dictionary for childhood brain tumors so that the healthcare community uses a signal, unified vocabulary in recording data.

Creating a central database to serve as a one-stop shop for all childhood cancer researchers starts with developing uniform standards for data collection and labeling for participating researchers to follow.

We’re taking an important first step in creating a data dictionary for childhood brain and central nervous system tumors thanks to the expertise of Dr. Sam Volchenboum and the PCDC team at the University of Chicago. The dictionary is a detailed list of data fields with definitions and metadata details, such as data type, source, and units of measurement. These universal standards will:

• Ensure that researchers can query the data with reliable results.
• Speed up future data collection by enabling automated and secure data extraction from electronic health records.
• Allow researchers to combine and analyze data from multiple sources — even across oceans and language barriers.

The total cost to create the pediatric brain tumor dictionary is estimated at $540,257 over three years. PCDC estimates it will take this amount of time to reach the fundraising goal and complete this project.

What is a data commons?

A data commons is defined as a cloud-based infrastructure that includes storage for data and the computational resources and tools to analyze it. The research community can submit, request or download data and collect and analyze it on the commons infrastructure.

“By facilitating these tasks, the presence of a data commons relieves the need for the researcher to purchase and manage local storage, compute, or processing tools,” the American Society of Clinical Oncology notes.

Why a data dictionary is critical

We recently spoke with Dr. Samuel L. Volchenboum, pediatric oncologist and principal investigator at the Volchenboum Lab at the University of Chicago that hosts the PCDC, to learn more about the data dictionary. Dr. Volchenboum is also a co-principal investigator on the NCI’s Center for Cancer Data Harmonization (CCDH), which is developing the data model.

As we’ve noted, several organizations working toward creating the database that we believe is a key to curing childhood cancers and finding more humane and effective treatments. They include the National Cancer Institute’s Childhood Cancer Data Initiative (CCDI).

Volchenboum is advocating for the Pediatric Cancer Data Commons and the Center for Cancer Data Harmonization to work together closely. For instance, the harmonized data model CCDH is creating, with significant involvement of the UChicago team, will cover all types of cancer — both pediatric and adult. CCDI has also contracted with UChicago to integrate PCDC data dictionaries into the harmonized CCDH data model. This demonstrates the NCI’s “commitment to utilizing our data dictionaries for this national effort,” Volchenboum says.

Currently, data from children with central nervous system cancers is spread across several registries. Volchenboum and his UChicago teams are working with these registries, exploring ways to remove patient-identifying information from datasets so they can be imported into the data commons.

Developing a global data language

Developing a data dictionary is a time-consuming but critical step toward creating a data commons. According to Volchenboum, getting international consensus on data elements is a cornerstone of the childhood brain tumor dictionary project’s success.

“Prior to COVID, the PCDC team hosted international meetings where disease experts convened to debate and discuss every aspect of these data elements,” he said. “This work has transitioned to online meetings, but the format remains the same.”

Facilitated by the University of Chicago team, participants from countries around the world discuss each proposed data element. Once the dictionary is built, there will be an open comment period followed by a vote to adopt the dictionary.

“This entire process can take up to a year — sometimes more, depending on the complexity and size of the dictionary,” Volchenboum said.

After that, the PCDC team will work with the NCI’s terminology team to keep everything up to date so that the work can be propagated forward to future clinical trials.

“The ultimate goal of building the commons is to lower barriers to research, leading to new discoveries and better outcomes for children with cancer,” he says.

To hear from Bridge To A Cure Foundation Founder Bob Martin on our approach to accelerating brain tumor cure advancement, click here.

These two nonprofits exemplify the cooperative framework we need to accelerate research and find cures

There are over 100 organizations in the US defined as “childhood cancer interest groups.” From small family foundations started in memory of a child to big national organizations like the American Cancer Society, they are all working on different aspects of one problem: too many kids still suffer and die from cancer.

Their goals include supporting families, advocating for children with cancer, building awareness, and finding cures for childhood cancers, according to the Pediatric Oncology Group, which compiles the list.

The list is not all-inclusive; the actual number of nonprofits devoted to childhood cancer is almost certainly larger. Yet despite all these efforts, cancer remains the leading cause of death from disease for children in the U.S. and worldwide.

The “success story” that 80 percent of child cancer patients survive five years is commonly reported. Yet an estimated 1,800 children die in the US each year from cancer, and thousands more endure painful and debilitating treatments as their families watch helplessly. Further, the vast majority of those that do survive beyond those five years face lifelong physical and psychological impacts from cancer and the toxic treatments they received to beat it.

In our November blog, “Is Your Donation Doing the Most Possible Good?,” we identified five factors that the most effective nonprofits share. These groups:

1. Identify the problem in a fact-based, clearly articulated, and compelling way.
2. Set an audacious and clearly stated goal that is inspirational and measurable.
3. Set a deadline to achieve the goal and milestones along the way.
4. Rely on sound strategy, including mapping out processes systematically and holistically; identifying key players, issues and opportunities; and allocating resources and talent required to deliver the goal.
5. Collaborate with other groups, creating a shared vision to solve problems and utilize resources most efficiently.

At Bridge To A Cure Foundation, we are working to build cooperative relationships with organizations aligned with our mission.

Here are two outstanding childhood cancer initiatives that are worthy of support:

Children’s Brain Tumor Network (CBTN)

CBTN drives innovative discoveries, pioneers new treatments and accelerates open science to improve the health of every child and young adult diagnosed with a brain tumor. They provide their database to any researcher or scientist who needs it. This open approach to data is closely aligned with our goals to ensure stakeholders in the fight against childhood cancer collaborate to accelerate cures.

For example, CBTN is now working on 170 research projects involving 3,500 study participants and more than 20 leading childhood brain tumor research and treatment centers across the United States, Europe, Asia, and Australia. Member institutions contribute disease and scientific expertise; develop precision-based clinical trials; enroll research subjects; and collect biospecimens, clinical data, and other information needed for research. All these provide researchers with a comprehensive view of childhood brain tumor biology to aid the discovery of more effective therapies.

Brain and central nervous system tumors are the most common cause of death by disease in children from birth to 19 years old in the U.S. and across the globe, affecting 412,000 children and young adults each year. Yet as the CBTN points out, there has never been a drug developed to treat childhood brain tumors.

The CBTN is developing model for attacking brain tumors that can be applied to help all children facing cancer. Because there aren’t enough samples or information at any one hospital for researchers to make meaningful impact on their own, the group pulls together this data globally. CBTN projects explore the genetic underpinnings of distinct tumors in infants, children, adolescents, and young adults. Any researcher can apply to access data or submit specimens.

Consistent with Bridge To A Cure’s mission, the organization is working to make sure data gets into the hands of people who can make discoveries. We are proud to support their work.

Pediatric Cancer Data Commons (PCDC)

PCDC brings together clinical, genomic, and imaging data from institutions around the world to transform pediatric cancer research and outcomes. They do the critical work of developing the lexicon required to build an effective database to fight childhood cancer.

Based at the University of Chicago, the PCDC works with international leaders in pediatric cancers and the National Cancer Institute to harmonize existing clinical research data and standardize data collection.

By streamlining the process of bringing data together, the PCDC is aligned with our mission to tear down long-standing barriers that have held back progress in research. Through its PCDC Consortium, it is developing a common core data dictionary and governance for seven pediatric cancers: neuroblastoma, soft tissue sarcoma, acute myeloid leukemia, acute lymphoblastic leukemia, germ cell tumors, bone tumors, and Hodgkin lymphoma.

Collaboration Around Aligned Goals

Both groups also include key players in the National Cancer Institute’s Childhood Cancer Data Initiative (CCDI). For instance, Samuel L. Volchenboum, MD, PhD, MS, head of the Volchenboum Lab at the University of Chicago that hosts the PCDC, serves as a member of the CCDI. Adam Resnick, PhD, the Director of Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia, is working with both the Children’s Brain Tumor Network and CCDI.

These are some of the key players working in alignment with Bridge To A Cure’s approach to increase collaboration, funding and protocols toward finding cures for cancer in children.

We are working to expand alliances, like the one we’ve developed with the Pediatric Cancer Data Commons, and we are in talks with Children’s Brain Tumor Network to look at how we can collaborate. Both of these nonprofits are leaders in developing a robust national database and bio-specimen bank that supports research and breakthroughs for childhood cancer in a comprehensive, systemic way.