The ChadTough Foundation

Mission

The mission of The ChadTough Foundation is to fund research and raise  awareness for Pediatric Brain Tumors with an emphasis on Diffuse Intrinsic Pontine Glioma (DIPG).

The most hated word in the world of pediatric brain tumors is “rare”.  “Rare” is the reason there is not enough research being done. “Rare” is  the reason there aren’t drugs being developed. “Rare” is the reason  there is so little funding. “Rare” is why our kids don’t have more  options. The three facts below negate the claim of “rare”:
•Cancer is the number one disease killer of children in America
•Brain tumors are the leading cause of cancer-related death in children
•DIPG is the leading cause of death from brain tumors in children

DIPG

DIPG is a brain tumor found in the Pons of the brain stem. Children are  typically diagnosed between the ages of 5-7 with around 300-350 new  cases per year in the United States. The median survival rate is 9  months from diagnosis, only 10% of patients survive 2 years from  diagnosis. Long term survivors total less than 1%. 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, it is  sometimes described as looking “marbled”). One of our doctors called it  “the worst kind of tumor in the worst possible place”. The only standard  of care to treat DIPG is radiation. 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. You cannot surgically remove DIPG and until very  recently it was considered dangerous to even biopsy. This has resulted  in very little DIPG tissue being available for researchers to study.

Perspective

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 40 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 of childhood  cancer! Drug development is a huge issue for pediatric cancer. Drugs are  developed almost exclusively for adult cancers and then simply “taken  down” to treat pediatric cancers. Our children deserve better than this.

Progress

There is hope for DIPG. A few years ago, several DIPG family foundations  joined together with many of the top DIPG doctors and researchers to  form what is called the ‘DIPG Collaborative’. Of the many great things  this collaborative has done, one of the most critical was the launch of  the DIPG Registry. The DIPG Registry, funded almost exclusively by small  family foundations, has become an international registry of DIPG patient  data including basic patient information along with MRI scans and tumor  tissue. As surgical biopsy techniques become safer and as more parents
become aware of the value of donating tissue postmortem, researchers are  finally getting access to DIPG tissue. This is truly exciting!

After decades of nothing, there are discoveries being made about DIPG  almost on a monthly basis. In May of 2014, an amazing discovery that  there are 3 molecular distinct subgroups in DIPG  (http://www.nature.com/ng/journal/v46/n5/full/ng.2936.html). In May of  2015, a possible therapy  (http://www.nih.gov/news/health/may2015/ninds-04.htm) –

It’s astounding. In only six years, scientists have gone from knowing  virtually nothing about this tumor to understanding its underlying  genetics and finding a potential therapy,” said Jane Fountain, Ph.D.,  program director, at the National Institute of Neurological Disorders  and Stroke (NINDS), part of NIH. “This study epitomizes collaborative  medicine at work. It took a dedicated team of international scientists  working with patients, families and foundations to get to this point.

Vision

DIPG presents a great challenge, it is an extremely difficult and  complex disease. We believe a cure will come from talented, passionate  people working collaboratively. It will come from “Thinking outside the  Box” and taking some risks. It will come from small breakthroughs  happening in many different areas of medicine. The ChadTough Foundation  is committed to funding this work.