For families facing high-grade glioma (HGG), the deadliest childhood brain cancer, the diagnosis often feels like a storm: dark, fast, and overwhelming. Treatments are limited, harmful, and too often ineffective. For more than 40 years, progress has been slow, treatments have remained painfully toxic, and children have borne the weight of a system that simply did not have the tools, data, or alignment it needed to change the forecast.

But this moment is different. And for the first time ever, thanks to the influence, funding, and relentless advocacy of Bridge To A Cure Foundation, the entire pediatric brain tumor community is coming together behind a series of unified goals:

• Drive shared data collection, access, and harmonization
• Cure high-grade glioma
• Pursue non-toxic treatments
• Leverage the full power of data and AI to get there faster

This is the culmination of the Bridge To A Cure mission from day one: to unite and transform the childhood cancer community’s approach to research with the goal of cutting the childhood cancer death rate by 50% by 2030.

Why HGG Has Been So Hard to Cure — and Why That’s Changing

High-grade glioma moves quickly. It infiltrates healthy brain tissue, resists nearly all available therapies, and evolves fast enough to outrun scientific understanding. For years, researchers lacked the visibility needed to track the disease’s behavior, not because they lacked dedication, but because they lacked something fundamental: shared, high-quality data.

Each hospital held only a few cases. Each research center saw only fragments. As a result, discovery moved slowly, and families waited under a sky that didn’t seem to clear.

Thanks to the combined momentum of our foundation’s advocacy and the Children’s Brain Tumor Network (CBTN), that reality has shifted. And by bringing dozens of childhood cancer foundations and more than 35 pediatric institutions together and uniting their data, imaging, biospecimens, and expertise, CBTN has created the largest collaborative pediatric brain cancer community in the world, and with it, new clarity, new insights, and new momentum.

This shared ecosystem has set the stage for something once unimaginable: real insight, real collaboration, and real possibility.

The BTAC–CBTN Partnership: Preparing 900 Datasets for a Brighter Future

Among the most extraordinary achievements of our network is the contribution made by 900 children with HGG, whose families shared clinical records, imaging, and tumor data in the hope that no other family would weather the storm alone.

To honor their courage, Bridge To A Cure Foundation is funding the work needed to prepare these 900 datasets to FDA gold-standard quality, the essential step for:

• powering new AI-driven research,
• supporting regulatory submissions,
• designing smarter, safer clinical trials, and
• moving toward less-toxic treatments that protect childhood.

This work turns raw information into a stable foundation where new discoveries can finally take root.

Bridge To A Cure is committed to completing the HGG dataset validation within a single year—an ambitious yet essential goal. By the end of 2026, this data will fully power the RADIANT AI pediatric research platform, enabling scientists to detect patterns no human eye could see and accelerating the development of safer, more effective therapies children urgently need.

A Gathering of Leaders: The SU2C High-Grade Glioma Summit

This January marks a pivotal shift. Stand Up To Cancer (SU2C) will host the first-ever national pediatric High-Grade Glioma Summit, bringing together leaders in oncology, genomics, AI, and clinical innovation.

This transformative Summit reflects the growing momentum across the entire field, shaped in part by years of Bridge To A Cure’s advocacy, coalition-building, and insistence that the community align around curing pediatric glioblastoma. The call for unity, shared data, and non-toxic treatments, championed consistently by Bridge To A Cure, helped create the conditions for a gathering of this scale to become a national priority. Summit attendees will come together, in person, to meet around these shared goals and collaborate on ways to achieve them.

Bridge To A Cure President Robert (Bob) Martin has been invited to join as a panelist, representing:

• the voice of families,
• the need for scientific collaboration,
• the promise of data-driven research, and
• the urgency of developing non-toxic treatments.

Bob’s leadership ensures the movement to cure HGG remains centered on the children who need it most and the families who have already endured far too many storms.

2026: A Break in the Clouds

Across childhood brain cancer research, the weather pattern is changing:

• Data is no longer siloed.
• Scientists are no longer working alone.
• AI is no longer a distant promise — it’s becoming a real tool.
• Families’ contributions are finally being honored through action.
• Institutions are aligning under shared momentum.

These are rays of light that are bursting through years of cloudy progress. And as the validated HGG dataset comes online in 2026, paired with Radiant AI insights and guided by collaborations strengthened through the SU2C summit, we approach a horizon that has remained out of reach for far too long: the possibility of safer, smarter, more effective treatments for children with high-grade glioma.

How You Can Help

Preparing the HGG dataset is not optional. It’s the foundational step that makes every discovery possible. And now, thanks to a $50,000 matching gift from a generous anonymous donor, every gift through December 31 is doubled.

This funding drives a new dawn for kids with cancer through:

• FDA-grade data validation
• AI-enabled research through RADIANT
• Collaborative scientific alignment heading into 2026
• BTAC’s advocacy at the SU2C summit
• And progress toward the non-toxic treatments children urgently need

Your support doesn’t just fund a project. It brings light into a space that has lived under clouds for far too long.

A Brighter Horizon for Children

We cannot change the past, but together we are reshaping the future, one dataset, one discovery, one act of generosity at a time. And families who have endured the darkest days are beginning to see the possibility of a brighter tomorrow.

As we enter 2026, hope is no longer just an idea — it’s our direction.

Double your impact. Fulfill the promise.
Donate through December 31: bit.ly/BTAC-double-impact

IT’S CHILDHOOD CANCER AWARENESS MONTH

HERE’S WHAT MATTERS MOST!

Pediatric glioblastoma is among the most lethal and devastating childhood cancers. My family has lived this journey Documentary Film.mov – Google Drive

The truth is stark: progress has been painfully slow—not for lack of brilliant scientists or promising technologies, but because too many institutions choose competition over collaboration.

Prestigious centers are hoarding patient data, research findings, and funding. Some are even diverting scarce dollars away from hospitals that urgently need support, while building financial reserves far beyond what is required.

The result? Duplication of effort. Fragmented silos. Wasted time. Vast regions of the country without adequate resources. And while institutions protect their turf, children continue to die from a disease that has seen little meaningful progress in decades.

Over the past 50 years, billions of dollars and countless hours have been invested. Yet the return on that investment has been negligible. The culprit is clear: a siloed culture that donors have—often unknowingly—funded. We all know what must change.

If a cure is to be found, collaboration and transparency must replace competition and concealment. Institutions must explicitly commit to collaboration in their mission statements. This demands a culture shift—and donors have the leverage to make it happen.

What You Can Demand as a Donor:

• Open Data Sharing – Require institutions to share patient and research data without delay or restriction.
• Collaborative Trials – Expand access for families by insisting on multi-institutional clinical trials.
• Collective Investment – Direct funding toward shared infrastructure—biobanks, genomic commons, AI platforms—where every dollar multiplies impact.
• Accountability – Ensure donor intent is honored; funds must advance cures, not inflate reserves.

Every child lost is a reminder that fractured efforts cost lives. A cure will not emerge from one laboratory or one hospital; it will come only from a unified front.

Your investment is precious. Make it count—insist that it fuels collaboration, transparency, and urgency. Together, we can demand results. Make your pledge below.

Click to sign the Donor Pledge for Collaboration in Pediatric Brain Cancer Research

CHILDHOOD CANCER AWARENESS MONTH DONORS

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

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

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

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

The Missing Pieces

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

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

A Call for Collaboration

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

A Shared Vision for the Future

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

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

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

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

Childhood cancers are complex and multifaceted challenges that require innovative and comprehensive approaches. While significant progress has been made in recent years, many of these cancers remain challenging to treat, and the need for groundbreaking research is more urgent than ever. One promising strategy is multidisciplinary research, a collaborative approach that brings experts from various fields together to tackle these complex challenges.

Take A Close Look at Multidisciplinary Research

In multidisciplinary research, clinicians share research goals and work on the same problem from their discipline’s perspective. This collaborative approach allows for a more comprehensive and in-depth understanding of the disease, as each discipline can contribute unique insights and expertise.

The findings from each discipline can be complementary, and a particular specialty can analyze each aspect uniquely. This can be necessary to answer complex research problems that cannot be adequately addressed by a single discipline alone. For example, a pediatric oncologist might focus on the biological aspects of a tumor. At the same time, a researcher might seek to understand better the patient’s genetic profile to slow tumor growth.

Benefits

Multidisciplinary research offers several key benefits:

• Increased Efficiency: By working together, researchers can avoid duplication of efforts and maximize the use of resources.
• Enhanced Innovation: Cross-pollinating ideas and perspectives can lead to innovative approaches and breakthroughs that might not be possible with a single disciplined approach.
• Improved Patient Outcomes: Multidisciplinary research can ultimately lead to better treatments and improved outcomes for children with cancer.

Multidisciplinary Research in Patient Care

A multidisciplinary approach to patient care can lead to a more thorough evaluation, accurate diagnosis, and tailored treatment plan.

For example, Multidisciplinary rounds (MDR) constitute a patient-centered care model wherein professionals from diverse disciplines collaborate in real-time to provide specialized expertise. These can include care partners, hospitalists, nurses, and pharmacists.

MDRs can help to ensure that all aspects of a child’s care are considered, from their physical and emotional needs to their social and financial well-being. This collaborative approach can also help to reduce the stress and anxiety experienced by families, as they know that their child is receiving the best possible care.

The Role of Bridge to a Cure Foundation

Bridge to a Cure Foundation supports multidisciplinary research into childhood cancers. By funding innovative research projects and fostering collaborations between researchers, we are helping to advance our understanding of these complex diseases and develop new and more effective treatments.

Through our efforts, with the support of people like you, Bridge To A Cure hopes to significantly impact the lives of children with cancer and their families.

Congress is considering a bipartisan bill to extend and increase funding for childhood cancer research – without the need for taxpayer investment.

It’s not every day we get the chance to support bipartisan legislation to speed up research for cures to childhood cancer. So we at Bridge To A Cure are excited to support the Gabriella Miller Kids First Research Act 2.0.

In 2014, Congress passed the original Gabriella Miller Kids First Pediatric Research Act to fund a 10-year program to advance research into rare childhood diseases. The legislation has provided $88 million of non-taxpayer funding to the National Institutes of Health over seven years.

With this funding, NIH established the very successful Gabriella Miller Kids First Pediatric Research Program (Kids First), which has funded many important studies into the genetic basis of childhood cancers and structural birth defects. The legislation is expected to provide another $38 million before it expires.

With the current law set to sunset before long, we need to extend and expand it to keep dollars, data and momentum flowing in the fight against childhood cancer. The Gabriella Miller Kids First 2.0 legislation will do that (learn more and sign a petition to Congress in support of it here.)

The bill would greatly increase funding for childhood cancer research through the NIH without using any taxpayer dollars. It would do this by channeling the funds paid by companies that break the law directly into critical medical research.

As Congress continues partisan battles on many fronts, the Gabriella Miller Kids First 2.0 enjoys wide bipartisan support with more than 40 representatives and seven senators cosponsoring it. More than 250 foundations and organizations —including Bridge To A Cure Foundation — plus more than 1,200 advocates in all 50 states have signed a letter of support for the new legislation.

The bill’s chief advocate is Ellyn Miller, Gabriella’s mom. At age 9, Gabriella was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor deemed terminal upon diagnosis. Gabriella quickly became a global advocate for children with cancer.

Less than a year after her diagnosis, Gabriella passed away. An interview filmed two weeks before her death led to her name being added to the first act allocating $126 million for childhood disease research.

Now the Gabriella Miller Kids First Act 2.0 legislation is working its way through Congress, and Bridge To A Cure is joining other partners in urging the public to support it. The new legislation strongly supports the third pillar of our action plan, to implement a new approach to childhood cancer research funding and increase funding allocated for research.

This is critical when we consider that cancer remains the single leading cause of death by disease among American children, yet currently only 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Because of limited research in the past 30 years, only four drugs have been developed exclusively to treat childhood cancer.

The new legislation is a also an important key to creating a national childhood cancer database, number one on Bridge To A Cure’s action plan. Funding from the legislation will help to develop a truly comprehensive shared-data resource for scientists researching the majority of pediatric cancers and structural birth defects; it will also support development of computational tools to analyze these very large, complex genomic and clinical data sets.

The Gabriella Miller Kids First Research Act 2.0 (HR 623) was introduced on Jan. 28 of this year by representatives Jennifer Wexton (D-VA10) and Tom Cole (R-OK4). In April, Senators Tim Kaine (D-VA) and Jerry Moran (R-KS) introduced a bipartisan Senate companion bill (S 1521). Both would take penalties that the U.S. Securities and Exchange Commission collects from pharmaceutical, cosmetic, food supplement, and medical device companies that violate the Foreign Corrupt Practices Act, and redirect them to critical research into rare pediatric diseases. Under the Gabriella Miller Kids First Research Act 2.0, these penalties would be perpetually designated for childhood cancer and disease research, instead of going into general treasury as they do now.

Join us in calling on Congress to pass the Gabriella Kids First Research Act 2.0. Learn more and sign the childhood cancer community letter of support at the Bridge To A Cure Foundation Kids First 2.0 landing page.

Transformative change requires a bold challenge.

“Unite Transform Cure” is the theme of our 2020 annual report (you can read it here). It reflects our commitment to speed up not only the search for effective treatments, but to actually end the scourge of childhood cancer.

Most doctors won’t use the word “cure” when discussing cancer, as there is yet no cure, although some treatments may be able to cure some people of some cancers.

We use the word “cure” as part of our theme because we know that an audacious goal requires an audacious challenge. Think of President John F. Kennedy’s challenge on Sept. 12. 1962: to land a man on the moon and return him safely to Earth by the end of the decade. Would that goal have been achieved without a bold challenge that at the time seemed out of reach? Doubtful.

When it comes to childhood cancer, most medical professionals avoid talking about cures because they don’t want to spark “unrealistic” hopes. The fight against childhood cancer has gone on for so long, many people have given up hope they will live to see a cure.

It’s time to jump-start hope.

JFK spoke of the moon challenge as “one we are unwilling to postpone.” He said we accept such challenges “not because they are easy, but because they are hard,” and because they “serve to organize and measure the best of our energies and skills.”

That’s what we seek to do as part of our mission to unite and transform the childhood cancer community’s approach to research. Our goal: to cut the childhood cancer death rate 50% by 2030.

To do that, we must demand more from the healthcare community, nonprofits, private industry, and our government. A key component of our action plan is to align and unite this diverse set of stakeholders toward this common goal.

We know this won’t be easy. We also know it is absolutely essential. We’ve heard the dreaded diagnosis and experienced the tragic journey of a 6-year-old girl bravely facing brain cancer, inspiring her family with hope to the end. We’ve felt the sense of helpless frustration watching a disease that has thwarted the best medical minds in the world take another young life, stalling hope again and again.

To win this fight will take a new approach. That’s why we’re working to transform a system that is built on competition to reap the benefits of collaboration. We serve as a lead catalyst for modernizing the nation’s approach to childhood cancer research, working with the healthcare community and childhood cancer foundations to fix a broken system.

In our first full year
operating as an independent 501(c)(3) nonprofit charitable organization, we’ve supported the National Cancer Institute Childhood Cancer Database Initiative (CCDI). This year our goal is to be represented on the CCDI development commission to ensure that the database is optimized and that patient families are represented.

Bridge To A Cure Foundation acts as a catalyst to connect the people, information, and assets needed to propel new treatments and cures for childhood cancer.
We are building consensus around our unique, multifaceted approach with some of the country’s most well-respected voices in the childhood cancer community, including nonprofits, patient families, and the public.

From our founding in 2017, we have been focused on tearing down barriers to effective cancer treatments. Applying principles from the most successful private sector companies, we identified the need for the following:

• A robust database containing everything we know about childhood cancer.
• Streamlined clinical trials to speed the development of lifesaving treatments.
• Collaboration between government agencies, private companies, and key research institutions.

As the pandemic disrupted lives and consumed vast energy in our healthcare system, we have relentlessly kept our focus on the changes needed to beat childhood cancer. This includes working with America’s leading institutions to identify and understand the barriers they face.

We’ve collected input from Duke Cancer Institute, Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, Children’s Hospital of Philadelphia, and other leading cancer centers. Our goal is to ensure that the changes we advocate serve those working to develop the most promising new treatments — those that may lead to cures.

We’ve worked in the past year to identify attributes of the most successful nonprofits. These include targeting a compelling problem; setting an audacious, inspirational and measurable goal and a timeline for accomplishing it; and collaborating with others working toward the same ends.

In the coming year and beyond we will continue forging relationships and partnerships with change-makers to align their resources, talents, initiatives, and expertise toward our unified goal of reducing the death rate of childhood cancer 50% by 2030. With the continued help of our engaged partners, donors, volunteers, and supporters, we will keep our eye on the prize: curing childhood cancer — once and for all.

What we can do to fight the trauma of childhood cancer + COVID-19

Every time 5-year-old Julia Malicki goes to the doctor for cancer treatments, she has to brave having a cotton swab stuck up her nose to the back of her throat to test for coronavirus. The fear and discomfort she endures seems almost unbearable for a child who has already lost her right eye, and 70% of the vision in her left, to a rare form of cancer called retinoblastoma.

It’s anguishing for her and for her mom, Jessica.

“It’s a lot of emotional turmoil as a child to have to go through that fear,” Jessica told USA Today in an article titled “‘Like a new diagnosis’: Cancer families struggle to continue treatment amid coronavirus pandemic.” “The COVID testing really impacted (her).”

Cancer + COVID-19: Traumatizing Kids & Families

Surgery, radiation, and chemotherapy already traumatize families emotionally, psychologically, and financially. Now they face the added fear and worry of contracting another potentially fatal disease.

Since October 2016, Julia’s family has traveled from Wisconsin to New York City every four weeks for her tests and treatments. After driving 17 hours, the family has arrived to find motels closed due to the pandemic. Due to COVID-19 rules, only her mother can be with her during hospital visits, depriving Jessica of the support of her husband or other family.

Disrupting Caregiving Comfort

Some patients have had their treatments postponed or delayed. Lakelynn Markham, a 6-year-old from Holly Springs, N.C., became a candidate for a clinical trial three years ago after doctors discovered a tumor pressing on critical nerves in her neck, disqualifying her from surgery.

For half of her life, Lakelynn and her family traveled to the Dana-Farber Cancer Institute in Boston for her treatment. The pandemic ended those trips. She now sees doctors at a Duke University Medical Center and receives treatments via overnight courier.

It means that she now has to fight for her life without her “superhero,”  a Boston nurse named Shawn, who used to help her through her treatments.

“He has magic,” Lakelynn told Raleigh, N.C. radio station WRAL, explaining that when Shawn prepared her IV, his magical hands made sure the needle didn’t hurt at all.

Children like Lakelynn get to know and trust their doctors and nurses, and depend on routines to help them through medical trauma. Changing routines can increase a child’s fear and anxiety.

They also face struggles that make the inconveniences healthy people face — like having to wear masks and maintain social distance — seem minor. Lakelynn has been doing these things since long before the pandemic began. And while she understands why she can’t play with her friends, it is still heartbreaking for her mom to watch her staring out the window at other kids having fun.

Raising the Stakes of Pediatric Cancer

For children battling cancer and their families, COVID-19 has disrupted surgeries, radiation and chemotherapy treatments, and added to their emotional, financial, and psychological trauma. The same is true for children and families fighting other major medical issues.

A new study in the journal JAMA Pediatrics looked at 48 children in the United States in intensive care with COVID-19. It found that 40 of them had significant medical issues and half of these were categorized as “medically complex,” meaning they were either dependent on technological support for survival or faced serious medical issues such as immunosuppression, usually connected to cancer treatment, the New York Times reports.

“Children with immunodeficiencies or children who have had chemotherapy are at higher risk for serious illness,” the article notes.

Yet children without previous medical problems have also ended up in intensive care, sometimes suffering from a condition related to COVID-19 known as pediatric multisystem inflammatory syndrome. It develops weeks after the initial coronavirus infection and assaults a child’s circulatory system with inflammation rather than directly attacking the lungs.

Treatment Must Go On

Despite the risks posed by the pandemic, experts warn against discontinuing chemotherapy, surgery, radiation, and other therapies for children battling cancer.

“We have observed in our conversations with colleagues from around the world that it is giving us major disruptions, and that children will die or have died, not because of the infection but because of how COVID-19 has affected their (health care) services,” Dr. Carlos Rodriguez-Galindo, told U.S. News.

Rodriguez-Galindo is director of St. Jude’s Global COVID-19 Observatory and Resource Center for Childhood Cancer, a new database of resources for medical professionals specializing in treating pediatric cancer. Similar to the national pediatric cancer database advocated by Bridge to a Cure Foundation, it includes a resource library, a global registry of pediatric cancer patients infected with COVID-19, and a collaboration space for healthcare professionals.

“We have learned from them that even the children that have active therapy for cancer with COVID-19 don’t seem to do that poorly, and that is reassuring.”

As a result of the pandemic, children and families battling cancer and other chronic and terminal diseases and conditions face longer odds and more harrowing battles than they did before. They need our help.

How You Can Help

• Follow COVID-19 guidelines including wearing a mask and staying at least six feet away from people when in public and washing your hands frequently. Parents of kids battling cancer appreciate when we do our part to stop the spread and help keep their kids safe.
• Support families who have lost children to cancer and those still in the fight. Some families who have lost children are experiencing PTSD and anguish over what other childhood cancer families and patients now face in the pandemic. Some practical ways mentioned in this article include contacting families via social media and asking how you can help — financially, through donations of supplies, or by offering to help with shopping or other errands. Visit via phone and video and be there to listen and provide emotional support.
• Donate blood and blood products such as platelets to help combat shortages due to blood drives that have been canceled due to the pandemic. Cancer patients desperately need these, so contact your local blood bank to schedule an appointment.
• Join the National Bone Marrow Donor Registry. Donated bone marrow and stem cells are a critical part of cancer treatment that help save lives. Learn more and join the national database/registry at DKMS.org or BeTheMatch.org.
• Make your voice heard through Bridge To A Cure. The Bridge To A Cure Foundation is working to help kids with cancer and their families by advocating for greater efficiency, collaboration and data sharing to find effective treatments and cures. Stay updated on our efforts, comment on the fight, and learn about other ways to help when you visit BridgeToACure.org and sign up to receive updates.

Social media posts:

Children with immunodeficiencies and those who have had chemotherapy are at higher risk for serious illness due to COVID-19.

Families going through surgery, radiation, and chemotherapy now face added trauma of possibly contracting another potentially fatal disease.

Lakelynn has to fight for her life without her “superhero,”  a Boston nurse named Shawn who used to help her through her treatments.

Children fighting cancer get to know and trust their doctors and nurses. Changing caregivers and routines adds to their fear and anxiety.

Despite risks posed by the pandemic, experts warn against discontinuing chemotherapy, surgery, radiation and other therapies.

Support families who have lost children to cancer and those still in the fight. Visit www.BridgeToACure.org.

Bill Gates + Bridge to a Cure = Path Forward

In Bill Gates’ 2015 TED Talk titled “The next outbreak? We’re not ready,” Bill warned that we were woefully unprepared to deal with the threat of a pandemic. He was right.

In the Bridge to a Cure Foundation’s March 2017 release, we identified the five barriers contributing to the unacceptably slow development of pediatric cancer treatments and cures.  The same is true for infectious diseases.

Globally the coronavirus has infected millions, killed hundreds of thousands, and decimated national economies and the lives of many families. Bottom line: we weren’t prepared. The next time — and there will be a next time — we must be ready. The Path Forward is now and here’s how we should implement it:

• Develop the response plan proposed by Bill Gates and be ready to implement it to identify infectious disease outbreaks early: Gates proposed we look at how the military prepares for war and use that as a model to prepare for the net pandemic. This includes having trained “soldiers” ready to deploy, reserves we can scale up rapidly, and war games-like training simulations. “Those are the kinds of things we need to deal with an epidemic,” Gates said.
• Ensure that the required numbers of trained human resources are prepared to deploy: This includes epidemiologists ready to study the disease and identify how far it has spread, along with medical teams trained and ready to treat patients. Using the Ebola outbreak as an example, Gates noted we were unprepared in these areas and warned: “A large epidemic would require us to have hundreds of thousands of workers.”
• Advance preparedness for clinical research to combat pandemics: Speaking of our lack of preparedness for Ebola, Gates said, “There was no one there to look at treatment approaches. No one to look at the diagnostics. No one to figure out what tools should be used. As an example, we could have taken the blood of survivors, processed it, and put that plasma back in people to protect them. But that was never tried.” In an article titled “Advancing Preparedness for Clinical Research During Infectious Disease Epidemics,” the authors state: “Clinical research is vital for an effective response to infectious disease epidemics. To be viable, preparations must be made in anticipation of infectious disease epidemics and must address barriers to rapid deployment and implementation.”

To meet these challenges we should follow the same approach developed by the Bridge to a Cure Foundation to modernize pediatric cancer research by unleashing resources already available today. Measures we propose include:

• Develop a robust national database for each microbial threat: As the article notes, “In many instances the point at which an epidemic occurs is the only time to gather data and generate new knowledge regarding disease characterization, prevention, and treatment. Experience from previous epidemics highlights how time and again, the research response is delayed and the narrow window of opportunity for enrolling patients during peak epidemic waves is missed.” We must provide a process and framework to capture the hundreds of millions of pages of research, medical files, and the science behind every treatment, drug and alternative medicine so that this data is available in advance of the next pandemic. To learn more, read our Sept. 24, 2019 blog Dying in the Dark and the April 15, 2019 blog Stop Pediatric Cancer Like We do Terrorists.
• Include alternative medicine/treatments: Develop a methodology to evaluate/approve alternative medicines/treatments. To learn more, read our May 29, 2018 blog Breaking Down Barriers, Bridging to A Cure.
• Capitalize on the proven capability of artificial intelligence: Research institutions have been slow to embrace this technology, trusting more in the mind of the researcher alone. Once a robust national infectious disease database is developed, we need to provide the methodologies and tools for researchers to extract meaningful findings. There are computers that can read and review hundreds of millions of scientific pages in seconds. Algorithms can be written to discover, analyze and predict from the data a robust global database would provide. To learn more, read our Feb. 15, 2019 blog Putting the Pieces Together for the Fight Against Cancer.
• Simplify, sensitize, and modernize the clinical trial process by speeding up and reducing complexity. Some ways to do this include pursuing simulated research, balancing life expectancy and quality of life, and including exemptions to allow terminal patients to participate in trials of experimental drugs. To learn more, read our Jan. 31, 2020 blog Solving the Clinical Trial Debacle and the July 25, 2019 blog The National Cancer Institute Knows How to Cure Pediatric Cancer.
• Align and collaborate across institutions and practitioners: Develop a reward and recognition system unique to infectious disease research — one that reinforces a culture of collaboration and spans across and within nations, institutions, governments and sectors. The article referenced above states, “There are multiple challenges to building equitable and mutually supportive partnerships. These include unequal access to funding, academic reward systems that incentivize competition over cooperation, silo-thinking reinforced by (artificial) disciplinary boundaries and commonly held assumptions regarding mutual capacities or needs. Fragmentation and competition among stakeholder groups, research initiatives, and disciplines represent a lost opportunity for shared expertise and learning, and to strengthen global, national, and regional research preparedness.” To learn more, read our Nov. 25, 2019 blog Why Reward Systems are Barriers to Pediatric Research Breakthroughs & How to Fix it.

We are at a moment in history where it is time to acknowledge the flaws in our approach to medical research and treatments, and how we respond to pandemics. Overcoming the barriers identified above is a good place to start. But that alone isn’t enough. We need a holistic strategic approach that engages participation from the medical community; pharmaceutical and technology companies; investment and investor communities; nonprofits/foundations and donors; and military, state, and local officials and government agencies.

It is time to recognize and value institutions and corporations for their contribution to the global good. The mantra of maximizing shareholder value alone is insufficient. Corporations should do more to better mankind — and they should be rewarded for it. In our May 2019 blog, we introduced the Millennial Organization. It revolutionizes the criteria for valuing organizations. The blog provides detailed evidence to support that the time has come for the Millennial Corporation — the organization whose stock value reflects not only sustainable profit growth but also its contributions to improving the human condition. Now is the time for the investment community and pharmaceutical industry to redefine the matrices for valuing this industry. Investing in childhood cancer would be a good place to start. To learn more, read our May 28, 2019 blog The Cure to Pediatric Cancer is at Our Fingertips.

The mission of the Bridge to a Cure Foundation is to increase the pace and success of childhood cancer research. In order to do that, we need to remove barriers to finding cures and effective treatments. The clinical trial process is one such barrier. Without clinical trials, there are no new drugs. In this blog we examine:

• Why we need childhood cancer clinical trials.
• Proof that today’s clinical trials are a debacle.
• The reasons why the current process is failing.

Why we need childhood cancer clinical trials

• To ensure that the drug(s) are effective. “Children and adolescents are not small adults, and their bodies’ physiology and chemistry react very differently to illness and disease. Thus, pediatric clinical trials are critical to developing treatments and cures for childhood disease and illnesses.”
• To identify harmful side effects and “provide reliable evidence of treatment effects by rigorous controlled testing of interventions on human subjects.“

Proof that today’s clinical trials are a debacle

• In the last 25 years, the FDA has received only 30 applications for new drugs for use in pediatric-specific oncology.
• Few drugs have been developed — Since 1980, fewer than 10 drugs have been developed for use in children with cancer.
• The few drugs that have been developed have not delivered a cure and have been appallingly harmful and ineffective. As a result:
  • Cancer remains the number one cause of death by disease among children.
  • There has been no change to the survival rate for children with brain and other nervous system cancers for the past 20 years.
  • Even with survival defined as a child living for a mere five years, only 75% of childhood cancer patients meet that yardstick.
  • More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age.
• Many clinical trials for children are abandoned and their results never published.
• Few clinical trials are conducted in childhood patients compared to the number of industry-supported clinical drug trials conducted in adults, a 2012 study found.

Why the current childhood clinical trial process is failing

• The criteria for approval is insufficiently vigorous — Children are considered survivors if they live a meager five years. If a child surviving five years is a goal researchers can celebrate and be rewarded for, then we should not be surprised that that’s what our solutions deliver. The five-year measurement fails to acknowledge the child’s horrific suffering, the emotional strain on parents and siblings, or the financial impact on the family.
• Lack of participation — One study identified 30 potential barriers to participation in childhood clinical trials including a relatively small population of available participants; high cost and lack of incentives for pharmaceutical companies to perform drug trials; potential legal risk to the pharmaceutical sponsor; ethical concerns regarding participation of children in trials; and a lack of adequately trained pediatric investigators.
• Lack of Funding — Pharmaceutical companies won’t invest. “One significant challenge in developing drugs for children is the perspective that pediatric medicines do not provide industry with similar financial rewards as adult medicines,” said Benjamin Ortiz, MD, who formerly served as Medical Officer in the Office of Pediatric Therapeutics at the FDA.
• The pharmaceutical industry “may have been reluctant to study medicines in children” for several reasons, another NCBI study says in an obvious understatement. “The market for the sale of many drugs for children is smaller than that for adults, and therefore investment in childhood drug testing might be less attractive financially. Other reasons cited in this report include ethical difficulties, problems with blood sampling, and difficulties in recruiting sufficient numbers of children.”
• Pharmaceutical companies won’t provide drugs — “Access to drugs and the ability to explore them are the biggest barriers to changing standard of care for pediatric patients,” says childhood cancer expert Patrick Brown, Associate Professor of Oncology and director of the Pediatric Leukemia Program at John’s Hopkins. “We can’t mass-produce drugs, so we usually rely on drug companies to provide drugs for clinical trials,” says Brown. “The much smaller number of patients with childhood cancers compared to adult cancers and the risk of something going wrong with a drug being tested in children can make pharmaceutical companies reluctant to provide drugs.”
• The current clinical trials process favors research into diseases that affect adults over those that afflict children — There are over 300,000 clinical trials available today worldwide, of which there are only 26 childhood clinical trials in the U.S. (https://pediatrictrials.org).
• Ethical concerns — “Pediatric trials are more challenging to conduct than trials in adults because of the paucity of funding, uniqueness of children, and particular ethical concerns,” says a study from the National Center for Biotechnology Information (NCBI), which is under the National Institutes of Health.

We need a new national strategy and commitment to improve the clinical trials process for childhood cancer drugs and therapies. In part 2 of this blog, we will explore what needs to be done.

To read our prior posts providing solutions to improving our approach childhood cancer research, visit Bridge to a Cure.

The Bridge to a Cure Foundation is the lead advocate for modernizing our approach to childhood cancer, with a priority on building a childhood cancer database to speed up the search for cures. We have met and gained the support of over 120 institutions and practitioners, including the former NCI Director Ned Sharpless, who has become a forceful proponent and driver of this initiative in Washington. To learn more about the foundation and add your support, visit Bridge to a Cure.