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 cancer is a complex disease that can manifest in various forms, each with its unique characteristics and challenges. Traditional research methods have provided valuable insights but often fail to unravel the intricate biological mechanisms underlying these diseases fully. To address this, scientists are turning to a groundbreaking approach known as multiomics.

What is Multiomics?

Multiomics is a comprehensive research strategy that simultaneously analyzes multiple layers of biological information, including:

• Genomics: The study of an organism’s complete set of DNA.
• Transcriptomics: The study of the RNA molecules produced by an organism.
• Proteomics: The study of the proteins produced by an organism.
• Metabolomics: The study of the small molecules involved in metabolism.

By integrating these different data sets, researchers gain a more holistic understanding of the biological processes involved in disease development and progression.

Bridge To A Cure Foundation and Multiomics Research

The Bridge To A Cure Foundation is committed to advancing childhood cancer research and improving treatment outcomes. By supporting multiomics research, the foundation is helping to drive significant advancements in this field.

One key benefit of multi-omics research is its ability to identify new therapeutic targets. By analyzing childhood cancer cells’ genetic, transcriptomic, proteomic, and metabolomic profiles, researchers can uncover specific molecular pathways essential for tumor growth and survival. This information can then be used to develop targeted therapies that selectively attack cancer cells while minimizing damage to healthy tissues.

Another important application of multiomics research is the development of personalized treatment plans. Traditional treatment approaches often involve a one-size-fits-all approach, which may only be optimal for some patients. Multiomics can help identify biomarkers predicting how a patient will respond to a particular treatment. This information can be used to tailor treatment plans to each patient’s specific needs, potentially improving outcomes and reducing side effects.

Challenges and Future Directions

While multiomics research holds great promise for advancing childhood cancer research, it also presents significant challenges. One of the main challenges is the sheer volume of data generated by these studies. Analyzing and interpreting this data requires sophisticated computational tools and expertise, which don’t come cheaply. Additionally, there is a need for standardized protocols and data-sharing initiatives to ensure that multiomics data can be effectively compared and integrated across different research groups.

Bridge To A Cure is tackling these complex challenges head-on by funding the Children’s Brain Tumor Network (CBTN) with $200,000 to explore data-driven solutions, including AI-powered tools, to streamline the extraction and analysis of electronic health records (EHR) data.

The Bridge To A Cure Foundation believes in advanced research approaches, like multiomics research, working tirelessly to improve the lives of children battling cancer. By supporting this groundbreaking approach, we can accelerate the development of new and effective therapies that ultimately lead to a cure.

Childhood cancer is a life-altering diagnosis for families. Facing it requires a multi-pronged approach, and thankfully, new technologies are emerging to offer glimmers of hope. One such innovation is the concept of digital twins, virtual replicas of a patient’s biology used to personalize treatment plans and potentially revolutionize pediatric oncology.

What are Digital Twins in Healthcare?

Imagine a virtual version of yourself, a computer model incorporating your unique genetic makeup, tumor characteristics, and treatment response. This is the essence of a digital twin in healthcare. These models create a dynamic representation of a patient’s health by integrating various data sources like medical imaging, genetic analysis, and real-time biometrics collected from wearable devices.

In the context of childhood cancers, digital twins hold immense potential. These “virtual patients” can be used to:

• Simulate Treatment Responses: Doctors can run simulations on the digital twin, testing different treatment options and predicting their effectiveness. This allows personalized therapy plans tailored to the specific cancer and the child’s unique biology.
• Predict Treatment Side Effects: Digital twins can forecast potential side effects of various treatments, enabling doctors to choose the most efficacious option with minimal adverse effects, improving a child’s quality of life during treatment.
• Develop New Therapies: Researchers can utilize digital twins to test the efficacy and safety of new drugs in a virtual environment before clinical trials. This reduces risks and accelerates the development of more effective treatments.

New Technologies Propelling the Digital Twin Revolution

The power of digital twins lies in their ability to leverage a confluence of cutting-edge technologies:

• Artificial Intelligence (AI): AI algorithms analyze vast amounts of patient data, identifying patterns and more accurately predicting treatment outcomes.
• Machine Learning (ML): ML models learn from existing data on childhood cancers and treatment responses, continuously improving the predictive power of digital twins.
• Big Data Analytics: The ability to collect, store, and analyze vast datasets, including genomic information, medical imaging, and treatment response data, is crucial for building robust digital twins.
• High-Performance Computing: Simulating complex biological processes within digital twins requires immense computational power, which high-performance computing provides.

The Impact on Childhood Cancer Treatment

The potential benefits of digital twins for childhood cancers are multifaceted:

• More Targeted Therapies: Digital twins pave the way for precision medicine, where treatments are customized based on a child’s needs. This can lead to higher cure rates and improved long-term outcomes.
• Reduced Treatment Burden: Doctors can choose gentler therapies by predicting side effects, minimizing the child’s physical and emotional toll.
• Faster Drug Development: Simulating new drugs in a virtual environment allows researchers to identify promising candidates faster, ultimately leading to more effective therapies reaching children in need sooner.
• Improved Patient Care: Digital twins empower doctors to make more informed decisions, improving patient care and family communication.

Challenges and the Road Ahead

While digital twins hold immense promise, there are hurdles to overcome:

• Data Security and Privacy: Safeguarding sensitive patient data used to create digital twins is paramount. Robust data security protocols are essential to earn patient trust.
• Model Development and Validation: Building accurate and reliable digital twins requires extensive data and ongoing validation to ensure their efficacy.
• Infrastructure and Accessibility: Not all healthcare institutions might have the resources and infrastructure needed to implement digital twin technology. Ensuring equitable access will be crucial.

Despite these challenges, the potential benefits of digital twins in treating childhood cancers are undeniable.

As research progresses and technology advances, Bridge To A Cure Foundation expects digital twins to become a cornerstone of childhood cancer treatment, offering a brighter future for children battling this disease.

The Future of Digital Twins in Healthcare

The impact of digital twins extends beyond childhood cancers. This technology has the potential to revolutionize the entire healthcare landscape, and Bridge To A Cure is helping to foster its use. Imagine a future where digital twins are used to manage chronic diseases, predict health risks, and even prevent illnesses. While this vision might seem distant, the strides in digital twin technology in pediatric oncology offer a glimpse into a future where personalized medicine empowers doctors to fight diseases more effectively, leading to a healthier future for all.

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

Why Smaller Foundations Fail

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

Operational Shortfalls

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

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

Inapt Strategies

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

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

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

Why Bridge To A Cure Has Flourished

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

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

Operational Excellence

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

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

Effective Strategies

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

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

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

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

Exponential Impact in 2023

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

Empowering Key Individuals

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

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

Strengthening Partnerships

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

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

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

Harnessing Technological Expertise

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

Influential Voices in Research

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

Transformational Research Progress

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

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

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

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!

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

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

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

Our 2021 strategic imperatives include:

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

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

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

Partnership Funding & Counsel

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

Resource Building

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

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

Advocacy

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

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

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

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

The Mission of the Bridge to a Cure Foundation is to increase the pace and success of pediatric cancer research. Building a robust national database is essential to making that happen. But it won’t happen without creating an environment of collaboration within and across research institutions.

This blog discusses:

• Why collaboration is important.
• The primary barrier to collaboration within the pediatric cancer research community.
• What needs to be done to fix it.

Why collaboration is important.

• Pediatric cancer is so complex and multifaceted that to expect individual researchers or institutions to have the breadth of knowledge necessary to deliver breakthroughs is unrealistic. To solve the many urgent challenges that individuals have failed to solve on their own, science must be able to harness ideas, people, and resources from across disciplinary and organizational boundaries.
• The building of a robust national pediatric cancer database will require a level of transparency and data sharing our nation has never seen before. It won’t happen unless collaboration is institutionalized throughout the pediatric cancer research community.
• It works. We know one attribute that the most successful companies in the private sector share is a culture of collaboration.
• An extensive study by the National Bureau of Economic Research illustrates the changing nature of scientific work with the need for large numbers of individuals with distinctive expertise to work collaboratively in the solution of a complex scientific problem.
• Collaboration is more than just getting a group of people in a room to work together to solve a problem. Collaboration is a mindset and a way of life, a core value that helps define an organization’s culture. Collaboration is how an organization works to achieve goals and objectives.

Primary barrier to collaboration – reward systems

• The study noted above highlights that while the demands for new, more expansive modes of organization push scientists towards larger collaborative groups, the reward system for science has not necessarily changed as dramatically.
• Reward systems are foundational to the culture within many organizations. Yet reward programs in pediatric cancer research often reinforces a culture of insularity that discourages collaboration. We need to change these systems to inspire collaboration if we are going to start generating breakthroughs in pediatric cancer.
• The reward system in medical research, including pediatric cancer research, generally recognizes behavior that is in conflict with collaboration; rewards and awards tend to go to individuals for breakthroughs. This is true for research institutions, grants issued by foundations, and national recognition programs.

How to fix it

• Pediatric cancer research institutions need to establish reward and recognition programs that inspire and motivate individuals to work collaboratively. Some ways to do this include:

Have team goals and team milestones. Make the team achievements the focus of the reward system.

Don’t ignore the individual. Each team member is still thinking about how their individual performance review will go. Include their individual performance towards collaboration and team goals, not just individual goals, in their reviews.

Keep the team focused on achieving outcomes, but reward acts of collaboration as well, especially if your team is in the early stages of creating a collaborative culture.

• Foundations need to add collaboration as criteria for awarding grants.

Foundations can influence and change culturesollaborative, if they make teamwork and information sharing a requirement for awards.

They need to find ways that allow the evaluation of grant proposals to factor in collaboration – between teams, disciplines, and even companies and institutions that may be considered competitors.

Within the context of collaboration, grant awards must include data sharing and transparency.

• Most annual recognition programs reward individual achievements. This holds true across all organizations, from the Nobel Prize to research foundation awards to the numerous industry association citations presented each year. Collaboration should be made an important criterion for all annual recognition programs.

Making collaboration a priority for the pediatric cancer research community is essential to achieving the breakthroughs so many children are counting on. To read our prior posts providing solutions to improving our approach pediatric cancer research, visit www.bridgetoacure.org.

The Bridge to a Cure Foundation is the lead advocate for modernizing our approach to pediatric cancer, with a priority on building a pediatric 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 www.bridgetoacure.org.

Much has been written about why the U.S. healthcare system costs so much and rates so poorly compared with healthcare in other industrialized nations.

Last year healthcare spending skyrocketed to $3.65 trillion, an increase of $250 billion in just two years. That’s more than the GDPs of many countries – including Brazil, the U.K., Mexico, Spain, and Canada – and by far the highest in the developed world.

“The national doctor bill dwarfs anything else we spend money on, including food, clothing, housing, or even our mighty military,” states a 2017 analysis in The Atlantic. It found that five percent of patients, including people with chronic diseases and victims of accidents and violence, account for 50 percent of all medical costs.

“For most people, the vast majority of all the health care they’ll ever get comes near the hour of death. Hundreds of billions of dollars each year are spent treating Americans who are in the last weeks, or days, of life.”

Medical research and development accounted for $171.8 billion in 2016, according to Research!America, less than 4.9 percent of the total $3.5 trillion healthcare bill that year. Hospital and surgery costs accounted for 32 percent, $1.1 trillion. Physician care accounts for about 20 percent and prescription drugs about 10 percent among medical spending categories.

People age 55 and over were responsible for 56 percent of health spending, according to a Kaiser Family Foundation analysis. It found that 36 percent of spending went toward people age 65 and older, while young people 18 and under comprised only 10 percent. Adults age 19 to 64, the largest group, made up 54 percent of spending.

The bottom line: we’re spending only about five percent of our total medical costs on research and 95 percent on everything else. This formula has not served us well when it comes to discovering cures for cancer and other chronic and terminal conditions, including those that affect children.

This fact weighs on my mind and informs our work at Bridge to a Cure. It’s especially acute for me when October rolls around. Oct. 8 is the second anniversary of the day we lost my granddaughter Clara to brain cancer. Her positive attitude and courage never wavered. Her memory inspires me every day to challenge the status quo and to address the barriers that prevent researchers from delivering the breakthroughs our children expect and deserve.

Are we spending that ever-growing $3.65 trillion annually for healthcare as wisely as we should? The answer is an obvious and emphatic “No!” It’s clear to me we would be better off if we reallocated a large chunk of the money we are paying out for hospitalizations, surgery, and end-of-life care and put it into research – beginning with the building of a robust national pediatric cancer database.

Many of the treatments we use today to fight cancer and other diseases, such as radiation and chemotherapy, have horrific side effects. Then there are those hundreds of billions of dollars we spend each year treating folks in their final months, weeks, or days of life. It’s no wonder our healthcare system is so costly, so inefficient, and so ineffective. It’s like we are pouring money into a deep hole, and just keep doing it because it’s the way we have always done it.

We have to find a better way to reallocate more spending to research, and to ensure we spend those dollars as wisely as possible. We advocate a process that focuses research dollars into the five areas we believe hold the most promise when it comes to finding cures and effective treatments for pediatric cancer and other conditions affecting children:

1. Develop a robust national database for each pediatric disease and disorder. Provide a process and framework to capture the hundreds of millions of pages of research, medical files, and other information.
2. Align and collaborate across institutions and practitioners. Develop a reward and recognition system unique to pediatric research – one that reinforces a culture of collaboration and spans from researcher to investor.
3. Include alternative medicine/treatments. Provide an assessment process to qualify as a treatment option in database.
4. Capitalize on the proven capability of artificial intelligence. Provide methodology and tools for researchers to extract meaningful findings from the robust database.
5. Simplify, sensitize, and modernize the clinical trial process. Streamline processes, pursue simulated research, and balance life expectancy and quality of life, including exemptions to allow terminal patients to participate.

Healthcare spending continues to grow at an alarming rate and is expected to approach 20 percent of GDP in the coming decade. The time is now to for us to demand that we redirect more of that spending to research. It’s the key to curing disease and preventing it in the first place – and to begin reining in costs of our out-of-control system.
To read our prior posts providing solutions to improving our approach healthcare visit www.bridgetoacure.org.

The Bridge to a Cure Foundation is the lead advocate for modernizing our approach to pediatric cancer, with a priority on building a pediatric cancer database to speed up the search for cures. We have met and gained the support of over 120 institutions and practitioners, including the 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 www.bridgetoacure.org.

Building a robust national database is crucial to energize breakthroughs
against cancer and other childhood afflictions

Last month President Donald Trump surprised advocates for cancer patients by proposing to spend $500 million over 10 years on pediatric cancer research, starting in 2020 with a focus on sharing patient data. Bridge to a Cure wants to make sure that happens.

In his State of the Union speech, Trump honored a “very brave” guest sitting with First Lady Melania Trump: 10-year-old brain cancer survivor Grace Eline, who raised money for pediatric cancer research before developing the disease herself.

Grace is not alone. In America, 30 million children struggle every day with the challenges of a debilitating chronic disease or disorder. These include 13 million children battling a serious disease plus 17 million struggling with psychological disorders.

One of those children might be your own child, grandchild, niece or nephew. Yet as anyone who has stood beside one of these helpless children knows, the medical results they are counting on are often disappointing. We are not seeing the breakthroughs we need to help these 30 million children. We shouldn’t be surprised. Without a robust national database, the information researchers need is limited and insufficient to deliver the breakthroughs millions of children are counting on.

The President pointed out that “many childhood cancers have not seen new therapies in decades.” Boosting funding by $50 million a year would equal an 11% increase over the $462 million that the National Cancer Institute (NCI) and other National Institutes of Health (NIH) institutes expect to spend this year on pediatric cancer, according to Science Magazine.

Sharing patient data will be a major initial thrust of the new funding according to NCI Director Ned Sharpless. Adding $50 million in the coming fiscal year “would afford a unique opportunity to leverage the power of existing data and develop new knowledge that will drive discovery and development of new approaches to treat childhood cancers,” the agency says.

Some critics worry that focusing on data will come at the expense of other parts of NCI’s budget. But Sharpless says he is “100% convinced that the area of artificial intelligence and machine learning will have a huge impact on cancer research and cancer care.”

Sharpless is former director of the Lineberger Comprehensive Cancer Center at the University of North Carolina (UNC) in Chapel Hill. There his team used IBM’s Watson supercomputer to organize data on new therapies to help determine what drug to give patients based on tumor mutations. He compared the Big Data approach to “a million paralegals that are really, really fast.”

“Having med students reading charts and abstracting them is just too slow, and so these tools that use natural language processing to extract the records are very useful,” he said. “That’s going to get us a million patients that are clinically annotated and aggregated with genomic data sets. That will allow us to do the kinds of things that we really need to do.”

About a year ago, I met with Sharpless for a couple of hours to discuss our mission at Bridge to a Cure Foundation. He was very supportive of our focus, and we support his proposal to boost patient data as a first step toward building a robust database for pediatric diseases and disorders.

We need to establish a process and framework to capture and analyze hundreds of millions of pages of research, medical files, information on traditional and alternative treatments, and other data in one place. This must be our primary thrust if we are to find effective treatments and cures for diseases that strike both children and adults.

Surprisingly, our nation does not yet have a robust database for pediatric disease and disorders. This is one of the main reasons we started Bridge to a Cure. Our mission is to increase the pace and success of pediatric research by unlocking resources already available today.

It will be up to Congress to decide which of President Trump’s priorities to fund in the federal budget. It is critical that funding for increased research into pediatric disease remains a budget priority with sharing data the primary focus.

Building a robust national database will require us to share ideas, research, and medical files. It’s the only solution that can tie together all that we know about diseases and disorders, while illuminating knowledge gaps we still need to fill. Building such a database on pediatric cancers can serve as a model toward using this approach to fight all pediatric diseases and disorders.

Together, we can make a difference in the lives of the 30 million children struggling every day with the challenges of debilitating chronic diseases and disorders. We need to give these kids hope and the will to chase their dreams.

The resources to build a robust national database are available today. With your help and support, we can make this happen. Join the crusade to improve pediatric research at www.BridgeToACure.org by pledging your support. While donations are appreciated, you can also make a difference simply by sharing your name here.

Help spread the word! Posts you may copy and paste into your social media accounts:

We support the #PresidentTrump proposal to spend $500 million on #pediatriccancer research. #childhoodcancer #childhoodcancerawareness #cancersucks

We must build a robust database for pediatric diseases and disorders. #pediatricresearch #childhoodcancerawareness

We are not seeing the #childhoodcancer research breakthroughs we need to help 30 million children with pediatric diseases and disorders. #cancersucks

Surprisingly, the #UnitedStates doesn’t have a robust database for pediatric disease and disorders. #pediatricresearch #pediatriccancer

Building a robust national database for pediatric disease and disorders requires sharing ideas, research and medical files. #pediatricresearch #pediatriccancer

Join the crusade to improve #pediatricresearch at www.bridgetoacure.org.