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

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

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

Why Do We Shave?

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

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

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

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

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

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

SWFL’s Everyday Heroes Show Up Once Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Coming Together To Find Cures

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

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

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

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

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

NUMBER ONE.

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

How heartbreaking?

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

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

Not all numbers are bad.

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

Funding Numbers

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

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

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

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

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

Childhood cancers include:

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

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

            Only one.

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

            Not one.

Treatments.

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

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

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

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

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

What can we do?

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

But that’s not enough.

We need two additional key partners to care:

– our government and its National Institutes of Health, and

–  the pharmaceutical industry.

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

And that’s not good enough.

The Role of Bridge To A Cure

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

Apart or together, the numbers are shocking.

The effort falls short.

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

That’s where Bridge To A Cure comes in:

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

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

We must unify behind families devastated by childhood cancer.

Pharmaceutical companies here in the U.S. invest millions of dollars in cancer drug development, and advances over the past few years from giants like AstraZeneca, Johnson & Johnson, Merck, and Roche are pushing the boundaries on combination therapies, cell therapies, and other novel approaches. This in turn, has pushed biotechnology firms into the realm of investor darlings. With this influx of investor cash, these companies are able to spend millions investing in even rare cancers.

Good news — for adults across the country. Unfortunately, this market dynamic leaves childhood cancer patients out of the picture. Because, although childhood cancer remains the number one cause of death by disease among kids in the U.S., there simply are not enough of these cases to capture investment.

And the federal government has not done much better. Over the past decade, they’ve invested just 4% of the National Cancer Institute’s budget for research into childhood cancers — just 2/10ths of a percent in healthcare spending overall.

Some may assume that breakthroughs for adult cancers are equally effective for those found in children. But childhood cancers are different in origin and presentation, so the therapies developed to cure adult cancers do not translate to childhood forms of the disease.

In addition, the toxic treatments used to cure cancers of, say, a 65-year-old, may work okay to extend that person’s life for few years, which is the goal of that treatment. However, the toxic effects of the treatment on a growing body can be devastating — to future growth and development, reproduction, brain function, nervous system, mental health — and on and on.

In fact, 95% of all childhood cancer “survivors” will experience lasting, sometimes life altering, effects from noxious treatments they were given that were developed back in the 1950s and 60s. This is the sad reality that families and children diagnosed with cancer face: outdated, adult treatment options with horrifically painful side effects. And a whispered truth in childhood cancer: a child may die “cancer-free” from the effects of the harsh treatments that did in fact, eliminate the cancer.

Of those kids who survive, 95% are likely face chronic health conditions, secondary cancers, cognitive impairment, and a shortened lifespan. And for their families? At nine times the cost of the average childhood hospital stay, caretakers of childhood cancer patients also may contend with financial ruin.

That’s why parents and grandparents, aunts, uncles, and other loved ones feel compelled to step up in any number of ways in desperate need to advance treatments and find cures. Families have founded more than 200 childhood cancer foundations in the U.S. Many of these fund specific research projects or give aid to other families financially and emotionally devastated by a childhood cancer diagnosis.

Some have become activists who lobby Congress for better funding, often sharing their stories of pain, disappointment, and struggle with any official or aide who will listen. Some hold local fundraisers from bake sales to car washes for cancer fighting organizations. And some simply share their stories their friends, neighbors, and colleagues — many of whom have no idea that this is the reality of a childhood cancer diagnosis.

The fact is, apart we will not be as effective as we can be together. That’s why Bridge To A Cure Foundation — founded by a grandfather who lost a young granddaughter to a brain tumor — is calling on childhood cancer foundations to unite. We’re calling on the childhood cancer research community to transform the way it conducts research and shares information. And we’re challenging the federal government to do better when it comes to funding childhood cancer research.

We’ve had enough.

Five-year survival rates don’t begin to tell the story of the cruel toll cancer inflicts on innocent kids — and all who love them.

“No. No, this isn’t possible. This is wrong. All wrong. Someone run another test. Get me another doctor. For Christ’s sake, someone punch me and wake me up from this nightmare.”

This is how one mom described her feelings upon getting the cancer diagnosis that would lead eight days later to the death of her baby girl.

Losing a child has been called the ultimate loss — the deepest, darkest hole of grief into which a human can plunge.

Yet childhood cancer is so inexplicably painful, so agonizing, so brutal, that cancer charities, researchers, and oncologists take heart where they can. For many, it’s in statistics such as an increased five-year survival rate for kids with cancer.

In recognizing June, Cancer Survivors Month, The American Association for Cancer Research touts “spectacular advances in cancer research” that have lengthened lives. The American Cancer Society says 84% of children with cancer now survive five years or more, a huge increase since the mid-1970s, when the five-year survival rate was about 58%.

They are measuring childhood survival rates like a batting average in baseball. But a child’s struggle against cancer is a journey, not a single event. Both the distance traveled and the quality of the journey is how we should measure success. And right now, that journey remains fraught with massive physical, mental, and emotional suffering for kids and their families.

The statistics overlook the trauma routinely inflicted in the standard of care treatments — the trembling fear of the child anticipating her next visit, the family’s economic devastation, the stress and emotional anguish of watching your child suffer through painful and debilitating treatments that can last for years. All these can leave lifelong scars for those fortunate enough to survive to adulthood.

 Cancer Traumatizes Everyone in the Family

The horrors that kids and families experience in battling cancer are cruel and agonizing, as anyone who has lived through this ordeal can attest. The pain and suffering children endure as they undergo standard cancer treatments spread devastation like tornadoes as they tear through parents, siblings, grandparents and other relatives, friends, and caregivers.

It starts with having to try to explain to a child that he or she has a potentially deadly disease — that the headaches, nausea, tiredness, swelling, lump, or aches in their bodies can’t be kissed or wished away. How can you as a parent answer when your child asks you: “Why me, Mom? Did I do something wrong? Is God mad at me?”

 Kids’ Suffering Brings Tears to Their Eyes and Their Parents’

Kids undergoing chemotherapy are constantly poked with needles and injected with powerful chemicals that destroy their immunity, making them more susceptible to other potentially fatal diseases, including COVID-19. The drugs are so toxic that we would probably not use them if there were any other choice. Cytostatic antibiotics, for instance, are among many chemotherapy drugs that are “cardio toxic” and can damage the heart if used too long.

Watching a child suffer has been called a living nightmare for parents. There’s nothing more agonizing than listening to your child cry “Stop, please, stop!” when the pain gets too much for them to bear. You feel so helpless as you watch them lose their hair, their appetite, and their energy and struggle through pain, nausea, rashes, sores, kidney and bladder problems, anemia, and bleeding. These are all among the long list of side effects kids endure through our current inadequate arsenal of chemo, radiation, and other standard treatments.

Then there is the sadness you feel in trying to comfort a child who feels isolated from their friends and sad as they miss out on doing things other kids can do. Cancers upset family dynamics, as siblings have to step up and help out parents facing exhaustion, and give up part of their childhoods as they wrestle with their own fears about the illness.

Financial Stress and Your Worst Fears

With all that you do to try to comfort your child, you face the added stress of wondering how you’ll be able to pay off massive medical bills that pile up as you are forced to take time off from work to drive, often long distances, for treatments. At the very time you need to be focused on caring for you child, you must wrestle with thoughts like: “I can’t keep missing work….What’s going to happen to my job? How am I going to pay off these thousands of dollars on my credit card?” All the while you struggle to keep up a hopeful and cheerful outlook for your child, while pushing down fears of losing your baby.

For too many families, there is no happy ending — just a never-ending string of days filled with loss, of dreams destroyed and milestones that will never be measured.

“The death of a child is considered the single worst stressor a person can go through,” Deborah Carr, chair of the sociology department at Boston University, says in Fatherly. “Parents and fathers specifically feel responsible for the child’s well-being. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Dread, Uncertainty and Lifetime Scars

As we applaud the fact that more children are living beyond five years, we can’t overlook the struggles they endure to reach that milestone, or the continued pain and suffering that may await them the rest of their lives.

Long-term side effects (called late effects) include damage to the heart, lungs, brain, nerves, kidneys, thyroid gland, or reproductive organs that can impact growth and development, emotions, thinking, learning, and memory. Adults who experienced childhood cancer have twice the suicide risk as the general population. The impact to mental as well as physical health is substantial.

Kids and teens that have undergone some types of chemotherapy may face higher risks of developing other cancers as they grow up. They often live with anxiety, depression, and fear that the cancer will come back. As survivors of childhood trauma, they may carry hidden scars that never go away.

“Because childhood cancer survivors are living longer, they are having more late effects after cancer treatment,” the National Cancer Institute says. “Survivors may not live as long as people who did not have cancer.”

The most common causes of death in childhood cancer survivors are:

1. The primary cancer comes back.
2. A second (different) primary cancer forms.
3. Heart and lung

When you consider the pain, suffering and agony cancer inflicts on families kids — even those fortunate to survive five or more years — it’s clear that how far we have to go before we can claim victory over this enemy.

We must clear a path to finding cures and treatments that don’t subject survivors to lifelong suffering, and give every child a chance to chase their dreams. To do that, the Bridge To A Cure Foundation proposes a radical change in the way we conduct clinical trials.

The clinical trial process was created for adults — not children. As a result, 50% of medicines used to treat children have been extrapolated from adult data without data to support safe and effective dosing for kids. The performance criteria for clinical trials is also based on adults, and fails to consider the child’s horrific suffering, the emotional strain on parents and siblings, the potential for deep psychological scars, or the debilitating impact of the financial burden.

Children are not small adults, and their bodies’ physiology and chemistry react differently to cancer treatments. We need a new clinical trial protocol tailored to children, and performance standards that protect their quality of life as they and their families go through this journey. Next month, we’ll look at this in more depth.

Young lives are lost daily because we’ve put blinders on research;
a National Pediatric Database will break down silos and shine light on finding cures

The cures for pediatric cancer and other terminal and chronic diseases are out there waiting to be discovered. Do we have the vision to find them?

As we examine what it will take to end the scourge of pediatric cancer and other “incurable” illnesses that strike kids, we’ve looked at what the following entities must do to change:

• Investors
• Donors
• Government (the National Cancer Institute)

Today we’ll look at research being conducted to fight pediatric diseases through public and private institutions. This is a vast area that encompasses work at major cancer research centers, universities, and children’s hospitals across the US.

There are hundreds such institutions working on different aspects of childhood health and disease – so many that no one seems to know exactly how many there are. For instance, there are more than 220 children’s hospitals where various forms of research are ongoing.

Yet despite all the research that’s going on, and billions of dollars spent, “the causes of most childhood cancers remain unknown,” according to NCI. This is one reason why cancer remains the leading cause of death from disease among children and adolescents in the US.

“Although substantial progress has been made in the treatment of several types of childhood cancer over the past five decades, progress against other types has been limited,” NCI states.

Research on childhood cancers and other diseases tends to be narrowly focused on specific drugs, treatments, and genetic or other causal factors. For this reason, there is good chance we may be missing the forest for the trees when it comes to finding cures.

For instance, the National Institutes of Health announced last year it had formed a new Trans-NIH Pediatric Research Consortium to coordinate pediatric research programs across its institutes and centers to “advance pediatric research on a global level.”

“The new consortium aims to harmonize these activities, explore gaps and opportunities in the overall pediatric research portfolio, and set priorities” among the 27 NIH institutes and centers that fund some aspects of child health research.

Yet when we at Bridge to a Cure contacted the consortium to find out if they were participating in building a National Pediatric Cancer Database, a spokesman referred us to NCI, saying, “This is an initiative of the National Cancer Institute.”

The consortium is made up of NIH officials. NCI is part of NIH. Yet they did not seem to be aware of what we believe is the most promising avenue for results in curing pediatric cancers and other diseases. This despite the fact that in FY 2017, NIH funded pediatric research grants and projects totaling almost $4.2 billion out of its annual budget of about $37 billion.

The main purpose of the NIH consortium is “to identify opportunities for collaborative research, identify gaps that need to be addressed, and try to harmonize the overall research effort at NIH directed toward child health.” So they should be deeply involved in work to create a National Pediatric Database that would combine everything we know about childhood cancers.

As we’ve pointed out, we need a National Pediatric Database now to empower researchers to:

• Access to all available information on the diseases, drugs and treatments to identify patterns that will help them prevent, diagnose, treat, and ultimately cure cancer and other diseases.
• Use the power of Artificial Intelligence and Machine Learning to search for synergies among existing conventional and alternative treatments and new ways to attack disease.
• Overcome hurdles posed by the existing patchwork of data, including data from unstructured electronic health records and other other sources collected for disparate purposes. Most existing databases “do not have sufficient quality to be used by AI algorithms to achieve the quality standard required for clinical trials.”

We have researchers with great minds spending mountains of money, yet there are many children’s diseases for which we don’t have a cure. This is unacceptable when we consider:

• In the United States in 2019, an estimated 11,060 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,190 children are expected to die from the disease.
• The most common types of cancer diagnosed in children ages 0 to 14 years are leukemias, brain and other central nervous system (CNS) tumors, and lymphomas.
• Ten to twenty million children and adolescents in the United States have some form of chronic illness or disability.

I believe the reason we don’t yet have cures or effective treatment for so many childhood illnesses lies in the fact that research today still lacks the unified database needed to tie together everything we know about these diseases.

It’s time for leadership of research institutions – whether they are cancer centers, universities, children’s hospitals, or other entities – to realize how a comprehensive national pediatric database could be a game-changer.

I am totally focused on building a national database that has everything we know about the specific diseases and every drug or treatment that could be used to attack those diseases, including:

• Causes of disease (still unknown for many forms of childhood cancer).
• Weaknesses in the diseases themselves (the approach most research centers take today.
• Bolstering the immune system and other systems such as angiogenesis and apoptosis to defend against disease.
• Fighting the energy sources that fuel disease processes.

To be truly comprehensive, a National Pediatric Database must also include data from every medical file of every child that has a specific disease, and information on non-traditional treatments and how they interact with conventional medicine. Right now we don’t have this data on conventional – let alone alternative – treatments. This is the system we must build if we are serious about stopping the diseases that rob children of their lives and their futures.

Our research institutions are full of skilled and dedicated people who want to achieve these breakthroughs. We must give them the data and the technological support they need to make sense of it. Artificial intelligence and quantitative analysis will give us the ability to hunt for synergies in drugs and treatments that hold the keys to cures.

Think about it: These cures could be staring us in the face. Will we have the vision to see them?

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.