Photo by Piron Guillaume on Unsplash
By Jen DeGregorio
Right now, there are more than 700,000 Americans living with a brain tumor in the United States, with nearly 80,000 people diagnosed each year (28,000 of which are children). More than one-third of these people will likely die from their tumor.
During the month of May, we honor the warriors who are currently fighting as well as those who have lost their battle to brain cancer, which is so often underpublicized. Our hope is that increased awareness will bring to light the need for clinical studies to improve early diagnosis, standardize treatment, and improve the health of those living with this terrible disease.
Brain cancer is the tenth leading cause of death for men and women and is the leading cause of cancer-related death among children. Still, the advancement in research of brain cancer has been excruciatingly slow. Since 1971, there has been an overall increase in survival of less than 10% for people with a high-grade brain tumor. The need for investment in this field of research is crucial.
When Tammi Carr learned her then 3-year-old son, Chad, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), she was horrified to learn that pediatric brain cancer receives less than 1% of all federal funding for cancer research. Brain cancer kills more children than any other type of cancer, and DIPG is the worst form of pediatric brain cancer. It is responsible for almost half of all pediatric cancer deaths, with a staggeringly low survival rate of nearly 0%. The reality is that pediatric brain cancer research has not received enough attention. Chad faced the same prognosis in 2014 as a child diagnosed with the same disease forty years earlier. To the Carrs, that was simply unacceptable.
Chad lost his battle to pediatric brain cancer after fighting for fourteen months. His journey, which Tammi wrote publicly about, created a magnificent wave of awareness that the family simply couldn’t ignore. Just months after Chad’s diagnosis, the Carr family founded The ChadTough Foundation, with a mission to inspire and fund game-changing research to discover effective treatments for pediatric brain cancer. They were determined to change the dire statistics of pediatric brain cancer for future families who would some day face the same battle they did.
Since Chad’s death, The ChadTough Foundation has granted over $6 million for pediatric brain cancer research, with just over half of it dedicated to the Chad Carr Pediatric Brain Tumor Center at Michigan Medicine. After decades of little to no progress, researchers are now making new discoveries almost on a monthly basis. With government funding remaining minuscule, the majority of the research funds are still coming from family foundations. However, in the past year, the National Institutes of Health (NIH) approved funding for DIPG-focused projects for the first time! In both cases, the initial research to justify the NIH grants was funded by ChadTough.
Doctors who choose to focus on finding a cure for DIPG are a special group. To face a disease that currently has essentially a 0% survival rate must be overwhelming at times. They know their funding is coming primarily from families who have lost a child to DIPG. “It’s a very different model of research,” explains Dr. Carl Koschmann. “The researchers in our lab work harder and stay longer because they have a personal connection with the families that have fought.”
Due to researchers’ dedication to these kids, the future outlook for this disease is changing. When Chad Carr was diagnosed in 2014, just three days shy of his fourth birthday, his parents were told there was no hope. He was not expected to see his fifth birthday. They were told to take Chad home and enjoy the few months they had left with him. Because they, and other families who have lost children to DIPG, transformed their grief into action, families who receive a DIPG diagnosis today receive a very different message. Dr. Michelle Monje of Stanford Medicine recently published some groundbreaking work in the study of pediatric brain cancer. “Over the last five years, we’ve made more progress as a field then we had in the previous fifty years,” she said.
This advancement has been enabled by two very important factors: tissue and funding. In addition to families like the Carrs donating their child’s tumor postmortem, brilliant scientists discovered a safe method to biopsy DIPG tumors, which was not the case when Chad was diagnosed. Being able to study the tumor, especially throughout the journey of a child being treated, has unlocked an increased ability to learn and adjust at a significantly increased rate. In addition to having access to tissue for study, there has never been more funding for DIPG research than now. This increased funding is enabling more research from those in the field and is attracting other great minds to study this most difficult challenge.
As a bonus, the work done on DIPG has been found to be beneficial for patients suffering from other types of pediatric brain cancer as well. Emerson Hoogendoorn, a 7-year-old from northwest Michigan, was diagnosed with a diffuse midline glioma, a brain tumor similar to DIPG. She went through two brain surgeries and several months of chemo and radiation before she qualified for an experimental trial of a drug called ONC201. Her mom, Ami, said, “ONC201 has allowed Emerson to live as normally as possible. She doesn’t look like a little girl fighting something so horrible. She can go to school every day, participate in her hip-hop classes and piano lessons. Without the trial, her journey would have been significantly altered.” The Hoogendoorns had heard of The ChadTough Foundation for years. But when they began this trial, they realized what an instrumental role the foundation had played in providing the awareness and funds that made this trial available to Emerson.
May was going to be a high point for The ChadTough Foundation. We had planned to focus on Brain Cancer Awareness Month by hosting our fourth annual gala and rallying behind DIPG Awareness Day on May 17th. Instead, we find ourselves in a worldwide health crisis. We see pain and suffering all around us. Life will not be back to “normal” for most of us for a very long time. However, this is especially true for families facing a DIPG diagnosis. What was already a horrible situation just got significantly worse. In some cases, clinical trials have had to be put on hold. Researchers have not been able to get into their labs. So during this important month, our staff is instead focusing its efforts on plans for the remainder of the year. The online auction typically held in conjunction with the gala in May will now be held in September, concluding on what should have been Chad’s 10th birthday on September 26th. We will also be hosting our 7th annual RunTough for ChadTough 5K and 1M Fun Run as both a virtual run and with local options in Saline and Grand Rapids, Michigan, and Sylvania, Ohio.
We are all facing new challenges and the fear of uncertainty. But we know how important it is to keep the momentum going in the fight against pediatric brain cancer. We believe a breakthrough is on the horizon. When a cure is found for DIPG, the worst kind of brain cancer, it will also lead cures for other types of brain cancer as well. Every child deserves to survive cancer. Period.
In addition to serving The ChadTough Foundation as the Director of Communications, Jen DeGregorio manages PR/marketing and events for several non-profits across Washtenaw County. She began her career in newspapers in 1995 as a means to cover college expenses. After completing her degree at the University of Michigan-Dearborn in English, she continued to build a career in advertising with the Ann Arbor News.
She was one of the first hires at AnnArbor.com and became an integral part of the management team. In 2012, Jen decided to start her own businesses, with a focus on helping small businesses and non-profits.
She splits her time between her home in Dexter, Mi and an apartment in NYC where her husband has worked for almost a decade.