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.

IT’S CHILDHOOD CANCER AWARENESS MONTH

RESEARCH INSTITUTIONS ARE THE BARRIER!

NOT THE RESEARCHERS

Pediatric glioblastoma remains one of the most devastating childhood cancers. My family has lived this journey Documentary Film.mov – Google Drive

The greatest obstacle to progress is not science or technology—it is culture. Too many prestigious institutions hoard data, guard funding, and even divert resources from hospitals that struggle to meet the needs of their patients. The result: duplication, silos, wasted resources, and entire regions left without adequate care. While institutions protect their turf, children are dying from a disease that has seen little meaningful progress in decades.

Why Change Is Non-Negotiable

• Rarity demands scale. No single center sees enough cases or holds enough data to solve this disease. Only pooled knowledge and shared resources can yield statistically valid insights.
• Collaboration accelerates progress. Unified trials and infrastructure reduce duplication, broaden patient access, and generate results in years—not decades.
• Resources are scarce. Every dollar consumed by competition or redundant effort is a dollar not spent advancing cures. Shared platforms ensure maximum impact.
• Mission must outweigh prestige. Institutional rivalries cannot be allowed to determine life-or-death outcomes for children.

For fifty years, billions of dollars and countless hours have been invested with negligible return. Progress has been stalled not by lack of ability, but by a siloed, protective culture. We know what must be done:

• Open, unrestricted data sharing across all centers.
• Shared infrastructure for biobanks, genomic data, and AI platforms.
• Joint clinical trials that expand access and accelerate results.
• Transparent research sharing to prevent duplication and expand the data pool.
• Equitable funding distribution that strengthens resource-limited hospitals.

If a cure is to be found, collaboration and transparency must replace competition and concealment. Every institution should embed transparency and collaboration in its mission.

The Path Forward

Change will not occur by good intentions alone. Institutions are unlikely to move independently. What is required is a pediatric glioblastoma summit—a forum where leaders agree on principles, establish timetables, and commit to implementation.

Childhood Cancer Awareness month is the time for each institution to pledge their support for such a summit; a summit that will knock down barriers, one that will advance collaboration, transparency, and urgency. Make your pledge below.

Click to sign the Institution Pledge to Drive Collaboration and Transparency

CHILDHOOD CANCER AWARENESS MONTH RESEARCHERS

Bridge To A Cure’s reimagined approach to childhood brain tumor cancer was presented to the National Cancer Institute on October 5, 2017. The core imperatives driving the approach are:

• Data: Fuel a robust, multiomic brain tumor data ecosystem shared freely among all researchers globally.
• AI: Employ generative AI (artificial intelligence) throughout the research process.
• Nontoxic Treatments: Develop nontoxic treatments that target pediatric brain tumor cancer cells via the immune system, angiogenesis or apoptosis.

Thanks to NCI’S support and advocacy, this approach has been enthusiastically embraced by the broader pediatric cancer community, with our partners at the Children’s Brain Tumor Network (CBTN) leading the pack.

The team at CBTN, led by Dr. Naqvi, leveraging data and AI has successfully found a solution to targeting tumor cells without harming normal brain cells. This was just published by the Cell Report, a prestigious research journal that publishes meaningful breakthroughs that the entire research community has open access to.

Scientists studying aggressive childhood brain tumors (pediatric high-grade gliomas, or pHGGs) face a problem: there aren’t many unique “flags” on the tumor cell surface that can be targeted by treatments without harming normal brain cells.

To find new treatment targets, researchers looked at the differences in how cancer cells and healthy brain cells read and edit genetic instructions. They noticed that in tumor cells, some tiny bits of genetic code—called microexons—were missing from certain outer-layer proteins. Many of these proteins help nerve cells connect and talk to each other, including one called NRCAM.

NRCAM is a protein that sits on the surface of nerve cells and acts like Velcro, helping them stick to and communicate with each other so the brain’s wiring works properly.

In nearly every tumor sample tested, two specific microexons (numbers 5 and 19) were missing from NRCAM. This altered version of NRCAM wasn’t just different—it was critical for the tumor’s ability to spread and grow. When researchers made an antibody that specifically recognized this altered NRCAM, they could “mark” the tumor cells. Then, specially engineered immune cells were able to find and destroy them.

This discovery suggests that the altered form of NRCAM—and possibly other similar proteins—could be highly precise targets for new cancer treatments that train the immune system to attack only the tumor cells.

The landscape of pediatric cancer research is undergoing a dramatic transformation, driven by a determined spirit of collaboration, data sharing, and technological innovation. This shift is fueled by a growing understanding of the unique challenges faced by young patients and a collective determination to find cures. Bridge To A Cure Foundation played a leading role defining and transforming the approach to pediatric brain cancer.

A Shared Vision

In recent years, researchers, clinicians, and patient advocates have formed powerful alliances to accelerate the speed at which information is gathered, organized, and shared. Organizations like Bridge To A Cure partner, The Children’s Brain Tumor Network (CBTN), have fostered cooperation and accelerated research so that scientists can identify promising findings, uncover new insights, and develop more effective treatments by sharing data, expertise, and resources.

The Power of Data

Data is the lifeblood of modern research, and the pediatric cancer community has recognized its immense potential.

Initiatives like the Pediatric Brain Tumor Atlas (PBTA) are where support from Bridge To A Cure ,and other nonprofits, can have a greater impact. The PBTA is a groundbreaking initiative that leverages the power of multi-modal data from over 8,000 enrollees. This rich dataset, encompassing genomic information, clinical records, digital imaging, and more, provides a comprehensive view of each patient’s journey. By unlocking the insights hidden within this data, researchers can develop more targeted and less toxic therapies, ultimately improving patient outcomes.

Government Support and Innovation

Governments worldwide have also recognized the importance of supporting pediatric cancer research. Increased funding for research initiatives has allowed scientists to explore new avenues, such as immunotherapy and gene therapy. Additionally, advancements in artificial intelligence and machine learning have opened new possibilities for drug discovery, clinical trial design, and personalized medicine.

Bridge to a Cure is proud to support collaborative efforts that are transforming the landscape of pediatric cancer research.

The Gabriella Miller Kids First Act has created a powerful platform for researchers to share data, insights, and expertise. By making the CBTN PBTA dataset accessible to the global research community, we are fostering innovation and accelerating the pace of discovery. Together, we can build a future where every child has the chance to thrive.

A Culture of Collaboration

The culture of pediatric cancer research has evolved significantly, with a greater emphasis on collaboration and open science. This movement away from competitive research models in pediatric research has paved the way to real progress in pediatric cancer research and understanding congenital disorders. Researchers are increasingly sharing their findings and working together to address complex challenges. Forums like the Bridge To A Cure-sponsored Children’s Brain Tumor Network Summit, attended by hundreds of scientists and technologists in Virginia this past October offer opportunities for the pediatric brain tumor research community to explore ideas together. This collaborative approach removes traditional research barriers and accelerates the pace of discovery.

The advancements in pediatric brain tumor research in recent years is directly attributed to a collaborative approach within and across institutions. Childhood cancer nonprofits should do the same.  Next month’s blog will begin to explore this opportunity.

BRAVE THE SHAVE, the first annual Bridge To A Cure fundraising initiative, raised over $20,000 for St. Baldrick’s Foundation’s childhood cancer research initiative.

Children and their families impacted by a devastating cancer diagnosis were supported in an unprecedented way in Southwest Florida on St. Patrick’s Day, Friday, March 17th. Bridge To A Cure teamed up with St. Baldrick’s Foundation to bring community heroes together to raise funds for St. Baldrick’s childhood cancer research funding mission.

The fundraiser was held in memory of every child whose life has been impacted by childhood cancer, including Clara Ely, Bridge To A Cure president Bob Martin’s granddaughter. Clara was just six when she lost her battle with brain cancer. Her courage and optimistic spirit through that journey motivated the team of event volunteers, sponsors, and fundraisers.

Why Do We Shave?

Cancer is the number one cause of death by disease among children in the U.S. In fact, 42 shocked American families learn that their child has cancer every single day. And childhood cancer is a fight lost by 38 agonized children every week. Unfathomably, just four drugs have been developed for the treatment of cancer in children since the 1980s. And for childhood brain tumors, cancer’s deadliest form, none have been developed. Twenty years have passed, yet survival rates for children with many types of brain tumors have not budged. That’s why Bridge To A Cure Foundation is focused on curing brain tumors. Because if we cure brain tumors, we’ve achieved our life-saving mission to reduce childhood cancer deaths 50% by 2030.

The Bridge To A Cure Foundation coalition works tirelessly to connect people, information, and assets to propel new treatments and cures for childhood brain cancer—an effort that is transforming an underperforming healthcare research system by emphasizing open science, shared data, and collaboration. This initiative was boosted in a new and impactful way thanks to Bridge To A Cure’s partnership with St. Baldrick’s Foundation.

Partnering With St. Baldrick’s To Conquer Kids’ Cancer

With over $325 million in grants funded worldwide, St. Baldrick’s Foundation is the largest non-government funder of childhood cancer research. They focus on raising awareness, raising funds for research, and ultimately providing hope for kids and families. St. Baldrick’s distributes funds to worthy research projects after a rigorous evaluation by its prestigious scientific committee. In this way, Bridge To A Cure can assure BRAVE THE SHAVE donors that their dollars go to the best opportunities to advance cures.

BRAVE THE SHAVE was held at Bell Tower Shops, a modern open-air mall, last Friday afternoon. Many amazing businesses stepped up to help make BRAVE THE SHAVE a big success, with more than $20,000 raised. A special thank you is due to event sponsors Bell Tower Shops, Rivet Brands, Beasley Broadcasting, and the Boston Red Sox organization.

For fundraising participants, St. Patrick’s Day meant shaving their heads to show solidarity with brave cancer-fighting children. It was a bold and inspiring act. The “shavees” created a unique link for friends, family, and community members to donate to the effort, and in turn, committed to helping conquer kid’s cancer.

SWFL’s Everyday Heroes Show Up Once Again

The event involved dozens of firefighters, neighbors, and friends — even passing shoppers. It was heartwarming to see Cordi, a German visitor to Fort Myers, shave her head right there and then. In knowing the event was going to an important cause, volunteers and other attendees cheered on each shavee as they revealed their new looks. 

Two fire departments, the Fort Myers Fire Department and South Trail Fire & Rescue, were especially inspiring. These incredible individuals volunteered to fundraise and shave their heads as teams. The team raising the most money for childhood cancer research was South Trail Fire and Rescue, which raised over $7000. As a thank you, they received tickets to spring training game tickets and a framed autographed image of Carlton Fisk hitting the winning home run in the 1975 World Series courtesy of the Boston Red Sox.

In addition, individual shavees competed to  raise funds in exchange for a shave. Michael Rhodes of Team Rhodes raised $6350 to take the gold “Conquer Kids’ Cancer” medal of honor.

Bridge To A Cure couldn’t have done it without your help

There were more than a dozen volunteers who helped make BRAVE THE SHAVE possible — each using their gifts and what time they could give to ensure an amazing event. Perhaps the unsung heroes of the day are the barbers, who donated hours of their time to make sure each shave reflectedwell on the shavee. Barber Nick Romero stayed the entire event and shaved a dozen heads — he even provided beer trims!

Bridge To A Cure extends our deepest appreciation for the support of so many kind individuals, teams, community members, sponsors, and friends. Without this support, collaboration, and care from those who believe in the mission, a lot more children would suffer needlessly at the hands of children’s brain cancer. Together we ARE making a difference in speeding up the pace of desperately needed treatments and cures for kids.

If you missed the event but would like to contribute, visit the BRAVE THE SHAVE donation page here. Proceeds support St. Baldrick’s Foundation.

To learn more about the event and see additional photos, follow us on Facebook. 

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.

Cancer in children and adolescents is considered rare. Despite its “rare” status, cancer is the leading cause of death by disease in children in the United States.

NUMBER ONE.

So, while it may be rare, it is rarely insignificant and always heartbreaking.

How heartbreaking?

Each day 43 children are diagnosed with cancer. 15,590 every year.

• 6 is the average age of diagnosis (age 67 in adults).
• 1 in 5 kids will not survive their cancer battle.
• 84% of children with cancer in the U.S. are alive at least five years after diagnosis; however, this does not mean they are cured or free from long-term side effects.
• 2 of every 3 kids who are cured often suffer long-term side effects from their cancer treatments.
• Childhood cancer survivors are twice as likely to suffer chronic health conditions later in life than those without a history of cancer.

Not all numbers are bad.

• There are approximately 450,000 survivors of childhood cancer in the U.S.
• The odds of your child developing cancer is approximately 1 in 330.
• Today, about 90% of kids with the most common cancer – Leukemia – will survive.

Funding Numbers

The National Institutes of Health (NIH) has an annual budget of more than $42 billion. Forty-two billion! NIH-funded research has led to breakthroughs and new treatments, helping people live longer, healthier lives.

Unless, apparently, that life belongs to a child with cancer. Of that whopping sum of $42 billion, only $1.7 billion – 4% – goes to childhood cancer research.

And while adult cancer receives as much as 60% of its funding from pharmaceutical companies, kids’ cancer research receives next to nothing from these companies.

Why? Because pharmaceutical companies make many decisions based on profit, on numbers, and the number of childhood cancer cases is relatively small compared to adult cases, so the profit is lower…or nonexistent.

The bigger question is: why doesn’t the government invest more in childhood cancer research and treatments?

Childhood cancers include:

Leukemia (accounts for 28% of all childhood cancers)
Brain and spinal cord tumors (25% of childhood cancers)
Neuroblastoma
Wilms tumor
Lymphoma
Rhabdomyosarcoma
Retinoblastoma
Bone cancer

Of these, only leukemia has seen significant advances in treatments and success.

            Only one.

Brain tumors – the leading cancer of death among kids, have not had one new treatment developed for its treatment and cure. Never.

            Not one.

Treatments.

Yes, many treatments have been developed for cancer – adult cancer, that is. But adult and childhood cancer is not the same thing.

– 80% of the time, cancer in kids has already spread by the time of diagnosis.

So, what happens? We treat kids with cancer with adult treatments, adult drugs. We perform surgery, put them through radiation therapy, and poison their young bodies and minds with chemotherapy.

And while these do help to some degree, these adult treatments cause irreparable damage to young bodies and minds.

More research is needed to continue to improve childhood cancer survival and to decrease the toxicity of treatment.

What can we do?

Currently, more than 200 childhood cancer foundations exist in the U.S. alone. 10’s of 1,000’s of people volunteer to lobby, participate in events, lobby their political leaders – all with a driving desire to help create change. And 1,000’s of dedicated and underfunded researchers are searching for improvements and cures.

But that’s not enough.

We need two additional key partners to care:

– our government and its National Institutes of Health, and

–  the pharmaceutical industry.

Until research is appropriately funded, until our government leaders take action, the fight for childhood cancer cures will not run like a gazelle but will continue moving at the pace of a slug.

And that’s not good enough.

The Role of Bridge To A Cure

One problem is a lack of cohesion. While many individual people and parts are involved in working for a cure, there is not enough sharing and working together. Nor is there a system to enable this process. Yet.

Apart or together, the numbers are shocking.

The effort falls short.

The concern by those we need to be concerned does not exist.

That’s where Bridge To A Cure comes in:

• With our creation of a national cancer database, researchers can share with and learn from each other.
• We’re organizing the noise, unifying the elements – the people and the organizations that are working to find cures. We believe that together we can become the squeaky wheel that receives the attention – the funding – it deserves.

Then, success will be just around the corner. And until that happens, We’ve Had Enough!

Conventional metrics for gauging nonprofits fall short; it’s time to reward them based on collaboration and getting the job done.

We are a generous society. We Americans donate an estimated $400 billion of our hard-earned money each year to more than 1.5 million nonprofits that employ more than 10% of our workforce. Seems good, but are we getting our money’s worth?

People often choose to support a particular nonprofit based on a personal connection. Or it may be a cause that captures their imagination and emotion. Rarely do they research whether or not a charity is worth investing in.

The decision-making criteria we apply for investing in nonprofits is not the same as the criteria we apply for investing our savings in a company. Yet we can learn a lot from the way investors evaluate corporations.

Evaluating the merit of investing in a specific charity is harder than evaluating a corporation due to lack of reliable agencies that can provide meaningful and actionable data. There are only a few agencies that rate nonprofits. The largest has 20 employees and 12 analysts. That translates to about 75,000 nonprofits for each analyst. As a result they rely on one data point — percent of overhead. Yet this overly simplistic measure fails as a meaningful metric for several reasons.

Nonprofits, like for-profit corporations, need to invest in people and technology to be effective. But nonprofits are also different and need to be rewarded accordingly.

For instance, shouldn’t they receive high marks for collaborating, rather than competing with other nonprofits, to get things done? What should be the criteria for assessing the merits of nonprofits?

At Bridge To A Cure Foundation, we have been researching what differentiates nonprofits that have been successful from those that have not. Among our findings, the most effective nonprofits:

• Identify the problem in a fact-based, clearly articulated, and compelling way.
• Have an audacious and clearly stated goal that is measurable and inspirational. Too often goals are written that are not measurable — “helping kids do better” is not a goal.
• Set a deadline. They declare a specific time horizon to achieve the goal and each milestone along the way. Too many nonprofits avoid timelines for fear of losing funding if they don’t deliver. Well, they should!
• Rely on sound strategy. They map out processes in a holistic and systematic way, identifying key players, bottlenecks, issues and opportunities. They track and report on milestones. When it comes to resources, they understand there is no substitute for allocating and dedicating the resources and talent required to deliver the goal. They don’t dilute their plans for fear that the investment required will be rejected.
• Collaborate. They don’t just look at what they are doing but at the collective impact of all the players/entities seeking the same goal. They come together with a common agenda to define the problem and create a shared vision to solve it. Too many nonprofits don’t work together. This not only dilutes progress, it forgoes opportunities for cost-savings.

Today, 86% of donors believe that low overhead defines good charities. Only 6% of donors want to know if their donation is making a difference.

These are the donors who take the time to understand the nonprofit’s goal, strategies and progress, and how they learn from failures and reach goals. Yet many nonprofits are not making the difference they could when it comes to addressing society’s longstanding problems. Consider:

• Poverty has been stuck at 11-15% since the 1970s.
• There are five million more kids living below the poverty level now than there were in the 1960s when LBJ launched the war on poverty.
• One in five Americans is functionally illiterate, and it’s been that way for 30 years.
• The suicide rate has increased almost 30 percent since the 1990s.
• About 16% of America’s children live in households below the poverty line; for kids age 3 and younger, it’s 21%.
• In the past 40 years only four cancer treatments have been developed specifically for children.

In our next blog we will apply this criteria to explain the flaws within the childhood cancer nonprofit community and our plan to correct them. In the interim, please know that when it comes to achieving an audacious and challenging goal like cutting the childhood cancer death rate 50% by 2030, we at Bridge To A Cure Foundation will keep pushing to challenge the status quo that has left too many children and families without hope. We are thankful for our supporters, and ask for your continued support in the year to come as we push for a more effective approach to childhood cancer research and funding.

This month, we acknowledge those committed to identifying and destroying the most horrific terrorist cells in America – cancer cells!

These terrorist cells kill more children than any other disease. If we are to destroy them, we will need to provide our healthcare professionals with the medical arsenal to fight the fiercest terrorists targeting our children.

Thanks to the insight and input collected by the Bridge to a Cure Foundation from over 120 childhood cancer researchers and practitioners, we now know what our medical professionals need to finally wipe out these terrorist cells that target our children:

• A robust and dynamic national childhood cancer database.
• Algorithms that optimize the full capability of artificial intelligence.
• A simplified, sensitized, and modernized clinical trial process.
• A methodology to evaluate/approve alternative medicines/treatments.
• Collaboration and alignment within and across institutions.
• Pharmaceutical companies motivated to invest in ending childhood cancer.

CHILDHOOD CANCER HEROES

There were many institutions and medical professionals involved in the identification and development of these remedies for which we are appreciative. Today, we would like to give special recognition to those whose counsel and support have made a significant contribution to Bridge to a Cure’s work to identify the armaments we need to win the war on childhood cancer:

• Dr. Darell Bigner – Duke Cancer Institute
• Dr. Saskia Biskup – Center for Genomics and Transcriptomics, Germany
• Dr. Melissa Bondy – MD Anderson Cancer Center
• Dr. Alberto Broniscer – University of Pittsburgh School of Medicine
• Dr. Robert Darnell – The Rockefeller University
• Dr. Ira Dunkel – Memorial Sloan Kettering
• Dr. Henry Friedman – Neuro-oncologist, Duke Cancer Center
• Dr. James Garvin – NY Presbyterian/Columbia University Medical Center
• Dr. Todd Golub – The Broad Institute
• Dr. Dirk Hadaschik – CeGat Germany
• John Kelly III – Senior Vice President, IBM
• Dr. Robert Kerbel – Sunnybrook Research Institute, Toronto
• Dr. Mark Kieran – Dana-Farber Cancer Institute
• Rebecca Lambert – NED Biosystems
• Dr. John Letterio – University Hospital Cleveland
• Dr. Duane Mitchell – University of Florida
• Dr. Filiberto Munoz – San Diego Clinic, Mexico
• Dr. Jeremy Rich – Cleveland Clinic
• Dr. Ned Sharpless – Director, National Cancer Institute
• Dr. Linda Van Aelst – Cold Spring Harbor Labs
• Dr. William Weiss – University of California, San Francisco
• Dr. Ben Williams – Anti-Cancer Alliance

We especially want to give recognition to the institutions and individuals that have advanced the effort to develop the arsenal needed to destroy childhood cancer cells. These are the ones who want to change the status quo — the ones who realize that we cannot continue to repeat what has not worked and who feel the urgency to implement a better approach to childhood cancer research.

IBM’s Watson computer system uses artificial intelligence (AI) to aid cancer research.

KEY INITIATIVES

• A robust and dynamic national childhood cancer database — The National Cancer Institute’s (NCI) Childhood Cancer Data Initiative (CCDI) aims to make it easier for researchers to learn from each of the approximately 16,000 children and adolescents diagnosed with cancer in the US each year. CCDI is the beginning of realizing Bridge to A Cure’s top objective: creating a robust national database that contains everything we know about childhood cancers. CCDI aims to maximize every opportunity to improve treatments and outcomes for children with cancer; build a connected data infrastructure to enable sharing of childhood cancer data from multiple sources; identify opportunities to make data work better for patients, clinicians, and researchers; and develop and enhance tools and methods to extract knowledge from data.

• Algorithms that optimize the full capability of artificial intelligence — We are beginning to see AI used to guide cancer management, with the most prominent example being IBM’s Watson for Oncology (WFO). Each month Watson ingests about 10,000 new scientific articles and data on 100 new clinical trials to keep up-to-date on new findings. While some point to the system’s limitations, it is important to keep in mind how new the technology is, and to recognize those who are adapting it to the real world fight against cancer. Other childhood cancer institutions experimenting with the potential of AI include: Lucile Packard Children’s Hospital Pediatric Molecular Imaging Program and the Department of Pediatrics, Hematology/Oncology Section, both at Stanford University School of Medicine; Memorial Sloan Kettering Cancer Center; The University of Texas MD Anderson Cancer Center; the Department of Pediatrics, UNC School of Medicine; and the Sherry and John Woo Center for Big Data and Precision Health at Duke University.

• A simplified, sensitized, and modernized clinical trial process — Organizations such as The New York Genome Center are using state-of-the-art genomic technologies and collaborating with leading research institutions to investigate the origins, diagnosis, and evolution of cancer. This includes working with The Broad Institute to simulate pediatric tumors in the laboratory to the map the capacity of tumors to develop resistance to drugs and drug combinations.

• A methodology to evaluate/approve alternative medicines/treatments — Opposition to alternative treatments is one of the barriers we’re working to remove in the fight against pediatric cancer. Some efforts worthy of recognition include research studies in Complementary and Alternative Medicine (CAM) to reduce symptoms and improve well-being for children with cancer. While most of these have been limited to single institutions, publications such as The Journal of Alternative and Complementary Medicine are providing peer-reviewed studies to evaluate and integrate of CAM into mainstream medical practice. Medical marijuana is another promising area. Research by Yale Cancer Center showed a majority of pediatric cancer providers endorse its potential use for children with advanced cancer, although clinicians want to see much stronger clinical evidence that marijuana treatments can help relieve symptoms such as nausea and pain.

• Collaboration and alignment within and across institutions — We see increasing recognition of our goal of increasing collaboration among groups such as Stand Up To Cancer. SU2C funds “multidisciplinary and multi-institutional collaborative research projects that address critical problems in cancer prevention, diagnosis, and treatment to deliver near-term patient benefit.”

• Motivating pharmaceutical companies to invest in ending childhood cancer — As millennials become the dominant force in corporate culture, they demand companies work to improve the common good and not just the bottom line. Impact investing is one way to achieve both financial and social returns. Although impact investing is a relatively new strategy, its global market size is estimated to be $228 billion and growing, with 75% of investments generated from private investing strategies. Last year the CEO of BlackRock, the world’s largest asset manager with over $6 trillion in investments, called on CEOs of the world’s largest public companies to not just deliver profits but to fulfill their responsibility to make “a positive contribution to society.” The time is right to capitalize on the movement to value companies for their contributions to improving the human condition in addition to sustainable profit growth.

These are just a few of the innovations we want to highlight for International Children’s Cancer Day, which took place on February 15th. There are many others. As we raise awareness of the children battling cancer, we must focus and accelerate the momentum toward achieving the breakthroughs kids and their families so desperately need.

In closing, we want to dedicate International Childhood Cancer Day to all the childhood cancer researchers and child oncologist professionals for their dedication, caring, and drive to make a difference. Their commitment to saving children is a challenge both intellectually and emotionally. These dedicated professionals are motivated by the desire to save lives and to stop the diseases that remain the most common cause of death among children in America.