Mission, Vision, and Values
The mission of The ChadTough Foundation is to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on Diffuse Intrinsic Pontine Glioma (DIPG).
Brain cancer is killing more kids than any other type of cancer. DIPG represents 10% of all pediatric brain tumors but nearly 50% of all pediatric brain cancer deaths.
Our vision is for DIPG to no longer be a death sentence.
These are the values that guide all that we do:
- Family – We believe in prioritizing family, and we believe in acting like a family. Life is too short to miss opportunities to be with our families. We value relationships and informality.
- Collaboration – We work collaboratively internally and externally, and we only fund researchers who fully collaborate with other researchers because we believe collaboration leads to the best results and the most efficient use of funds.
- Integrity – We adhere to moral and ethical principles.
- Transparency – We will operate openly and candidly and provide full disclosure on issues around conflict of interest, operations, and funding practices.
- Toughness – We are resilient, and we fund resilient researchers. This battle against DIPG will present frustrations, disappointments, and setbacks, but our toughness, inspired by Chad, will ensure our eventual victory.
What Is DIPG?
Diffuse Intrinsic Pontine Glioma (DIPG) is the most common brainstem tumor in children, representing approximately 75-80% of all pediatric brainstem tumors.
Diffuse – spread out over a large area; not concentrated
Intrinsic – an extremely important and basic characteristic
Pontine – relating to or affecting the pons, the part of the brain involved in the control of breathing, communication between different parts of the brain, and sensations such as hearing, taste, and balance
Glioma – a broad category of brain and spinal cord tumors that originate in the glial cells that surround nerve cells and help them function
What makes DIPG so difficult to treat is not only its location (a very small area of the brain stem responsible for many critical bodily functions, including breathing, swallowing, respiration, equilibrium, and eye movement) but also the fact that it is diffuse (as opposed to looking like a solid mass or ball, it spreads out and mixes with healthy cells and is sometimes described as looking “marbled”). One of our doctors called it “the worst kind of tumor in the worst possible place.”
You cannot surgically remove a DIPG tumor. The primary standard of care to treat DIPG is still radiation; however, doctors are making breakthroughs on other treatment possibilities on a monthly basis. Radiation is used to shrink the tumor, giving temporary relief of symptoms, but after a period of time the tumor typically grows back. As it grows, it cuts off those critical bodily functions until the child can no longer swallow or breathe and eventually succumbs. While Chad went through only one round of radiation, doctors now often advise a second round. Over the past few years, multiple studies have confirmed that reirradiation does extend survival of DIPG patients.
When Chad was diagnosed in 2014, biopsies were typically considered too dangerous without enough benefit to justify the risk to the patient. That has since changed. Developments in the ability to analyze DIPG tumor tissue to deepen biological understanding of this disease and to develop new therapies for treatment, along with increased safety for the procedure, have led to brainstem biopsies now becoming common practice upon diagnosis of DIPG. This has enabled two key things: targeted therapies for patients and access to fresh tissue for researchers to better study.
With advancements in tissue availability, as well as computational sciences, genomics, and proteomics (the study of DNA, RNA, and proteins), research on understanding and finding treatments for DIPG has never been so active. There are more doctors working on DIPG than ever before. And while a homerun cure has not yet been found, doctors have evolved in just 5 short years from believing DIPG would always be a hopeless diagnosis to now believing a cure will be found in our lifetime!
Who Typically Faces a DIPG Diagnosis?
Children are typically diagnosed between the ages of 5 to 9 years old, with around 300 new cases per year in the United States. The male/female ratio of DIPG patients is 1:1.
Survival Rates for DIPG Patients
While research over the last 10 years has helped improve treatment for DIPG patients and has somewhat increased life expectancy, the prognosis is still not good, with the median survival range being from 8 to 11 months. Roughly 10% of patients survive 2 years from diagnosis. The 5-year survival rate has increased slightly over the last few years to approximately 2%.
History of DIPG Funding and Treatments
As a parent of a child with DIPG, it’s hard to describe the bewilderment and anger you feel when you are told the standard of care for DIPG has not changed in over 50 years. When you combine a lack of tissue to study with a severe lack of funding for childhood cancer, you end up with no progress.
Approximately 4% of the taxpayer-funded National Cancer Institute’s (NCI) annual budget is directed toward pediatric cancer. Not 4% for DIPG, not 4% for pediatric brain tumors … 4% for ALL childhood cancers! And until 2019, none of that federal funding was granted for DIPG-specific projects. Almost all DIPG research has been funded by private foundations, and almost all of those foundations were established to honor a child who passed away from DIPG. This network of DIPG foundations is working collaboratively to change the future for DIPG families. Some focus on funding research, either alone or together; some focus on family support; and some focus on influencing funding policy to direct more federal dollars toward pediatric brain tumor research, especially DIPG.
Drug development has also been a huge issue for pediatric cancer. Drugs are typically developed almost exclusively for adult cancers and then simply “taken down” to treat pediatric cancers. Our children deserve better than this. Thankfully, progress is being made on this front as well. There are now at least a couple of options showing great promise that were not available for Chad. And there has been a major breakthrough in drug delivery called convection-enhanced delivery (CED) that overcomes the blood-brain barrier, which has been a major obstacle to getting the drugs to the tumor in the past. (Chad was part of the clinical trial proving the safety of this new method.)
After decades of hopelessness, there is finally real hope for a cure for DIPG! Discoveries are being made on almost a monthly basis. The path to a cure for DIPG will most definitely be a marathon, accomplishing advancements one step at a time; however, we are now well past the starting line. New abilities to leverage targeted therapies, new drugs, new drug-delivery methods, new radiation protocols, more collaboration than ever before – the world of DIPG research is entirely different than it was just 6 short years ago when Chad was diagnosed. “It’s astounding. In only 6 years, scientists have gone from knowing virtually nothing about this tumor to understanding its underlying genetics and finding a potential therapy,” said Jane Fountain, PhD, program director at the National Institute of Neurological Disorders and Stroke (NINDS), part of NIH.