In September 2014, separated by 500 miles, the Carr and Mosier families each received the most devastating news a parent could imagine: Their sons had been diagnosed with the deadliest form of childhood brain cancer and given just nine months to live.
This month marks 10 years since Chad Carr and Michael Mosier, the inspirations behind the ChadTough Defeat DIPG Foundation, were diagnosed with DIPG. As we reflect on this significant anniversary, we also celebrate the remarkable impact our foundation has made in childhood brain cancer research and treatment over the past decade — funding advancements that are transforming the future of DIPG.
The State of DIPG Treatment in 2014
When the Carrs and Mosiers first heard the words diffuse intrinsic pontine glioma (DIPG), they were confronted with a stark reality: There was a severe lack of scientific understanding and treatment options for this deadly disease that threatened to steal their children. They learned that virtually no progress had been made against the same cancer that claimed the life of Karen “Muffie” Armstrong, Neil Armstrong’s 2-year-old daughter, in 1962.
Like Muffie, both Michael and Chad underwent radiation, the only standard treatment for DIPG at that time, a fact that had remained unchanged for decades. Heartbroken but determined, the Carr and Mosier families turned to experimental treatments, hoping to gain as much precious “bonus” time with their children as possible. United by their shared pain, they leaned on each other, outraged by the lack of government funding dedicated to finding a cure for this cruel disease — a disease that slowly robbed their children of the ability to speak, walk, and eventually, breathe.
A Legacy is Born
By the end of 2015, both families had endured the inevitable and heartbreaking loss of their sons. In the depths of their grief, the Carrs and Mosiers found a shared commitment to honor their boys by raising funds for research. Driven by a deep desire to change the future for others facing the same devastating diagnosis, both families established foundations with a common goal — to find a cure for DIPG.
Jason and Tammi Carr founded The ChadTough Foundation shortly after Chad’s diagnosis. Tammi discovered the power of her voice through social media, raising awareness and inspiring a growing community to rally behind the foundation’s mission. With strong ties to the University of Michigan (Chad’s grandfather was former Hall of Fame football coach Lloyd Carr, who led the Wolverines to a national championship in 1997), alumni from across the nation joined the cause, and soon support spread far beyond their hometown of Saline, Michigan. Other families, moved by the Carrs’ dedication, also joined the effort as family partners to fund promising research.
The Mosiers, too, felt compelled to take action. Faced with the fact that research funding for DIPG was so limited, they knew it was imperative to speak out and raise the necessary funds to develop new, effective treatments.
“There was this huge void after we lost Michael,” explained Jenny Mosier. “Mark and I wanted to channel our heartache into something good and try to change the future for other families who would one day be in our shoes.” In 2015, the couple founded the Michael Mosier Defeat DIPG Foundation. Families across the country soon joined their mission, becoming chapters or partner families.
Michael Mosier Defeat DIPG Foundation established a Scientific Advisory Council composed of leading experts on DIPG. The council rigorously reviewed and scored grant applications, making recommendations to ensure that the foundation’s resources were used to fund the most innovative research projects. Upon learning of this Scientific Advisory Council, the Carrs were eager to get involved.
“The Scientific Advisory Council the Mosiers put together is incredible,” said Jason Carr. “It’s made up of some of the best minds working to eradicate DIPG. As soon as Jenny and Mark told us what they were doing, we knew we had to be a part of it.”
“We admired the impact the Carrs were making on pediatric brain cancer research through The ChadTough Foundation,” said Mark Mosier. “Given our shared mission for finding a cure, we realized that combining our resources would amplify our ability to fund more projects at a higher level.”
In 2021, the two foundations officially united as the ChadTough Defeat DIPG Foundation. With the support of over 40 dedicated Family Partners who have embraced the foundation as their own, ChadTough Defeat DIPG has now committed more than $33 million to 80 researchers across 42 institutions worldwide.
“To put this in perspective, when Chad and Michael passed away in 2015, total funding for DIPG research was around just $3-5 million per year,” said Mark Mosier. “Today, our foundation alone funds more than that amount each year. We have become the largest source of funding for DIPG research.”
Unraveling the Mystery of DIPG & DMG Tumors
DIPG is an especially aggressive and challenging brain tumor, almost always fatal and predominantly affecting children. DMG (diffuse midline glioma) is a newer term for gliomas that invade normal tissue in the brain’s “midline,” which includes structures like the thalamus, brainstem, and spinal cord. Most biopsied DIPG tumors are diagnosed as DMG.
The blood-brain barrier, a protective layer of cells that shields the brain from harmful substances, makes delivering medication to the tumor difficult. While radiation therapy can temporarily alleviate symptoms, DIPG and DMG tumors almost always return.
“DIPG is the deadliest type of cancer known to man,” said Dr. Matt Dun, a biomedical researcher who lost his daughter Josie to DIPG in 2019. “We cannot send kids home with one oral drug and expect that to help. It’s just not going to work. We need more funding, and we need to flip the treatment paradigm on its head.”
While progress in developing new treatment options may seem slow, the past decade has brought groundbreaking discoveries that have transformed our understanding of these tumors. These insights are driving the creation of targeted therapies tailored to individual patients and the specific genetic mutations of their tumors.
ChadTough Defeat DIPG has proudly supported numerous projects that are reshaping the future of treatment for these challenging brain tumors. These advances offer renewed hope to families affected by childhood brain cancer, paving the way for more effective treatment options.
“Today, a patient diagnosed with DIPG/DMG has access to significantly improved care compared to when Chad and Michael were first diagnosed,” said Dr. Carl Koschmann, a pediatric neuro-oncologist at the University of Michigan who treated Chad. “We now have better diagnostic tools for molecular characterization, more effective treatments like ONC201 and CAR-T, which have shown promising anti-tumor activity, and enhanced support options.”
Funding Equals Progress
ChadTough Defeat DIPG research grants encourage brilliant researchers to focus on DIPG/DMG through Fellowship Grants for pre-doctoral and postdoctoral candidates, and New Investigator Grants for newly independent researchers.
In 2023, ChadTough Defeat DIPG saw a 50% increase in top-notch research grant applications, reflecting the foundation’s success in attracting more brilliant minds to the fight against DIPG. Awards continue to be based on rigorous review by the foundation’s Scientific Advisory Council to ensure that funds are used for the most promising research studies.
“The result of this uniquely designed granting process is that a broader range of new and innovative ideas can be pursued by outstanding scientists at different stages of their research careers,” said Dr. Suzanne Baker, ChadTough Defeat DIPG Scientific Advisory Council Chair.
Dr. Zach Reitman of Duke University was the first person to receive three grants from the ChadTough Defeat DIPG grant program. Initially awarded a Fellowship Grant in 2017, Dr. Reitman has remained committed to his work on DIPG, subsequently receiving New Investigator Grants in 2019 and 2022. This support is helping Dr. Reitman and his team understand why some brain tumors are resistant to radiation therapy, with the goal of designing new treatments to overcome this obstacle and improve patient outcomes.
“With the preliminary data I was able to generate through support from ChadTough Defeat DIPG, I obtained career development funding from the National Cancer Institute dedicated to DIPG research,” said Dr. Reitman. “Without the support of ChadTough Defeat DIPG, there would likely be less federal research focus on DIPG. This type of funding is critical for ensuring that top labs study DIPG.”
ChadTough Defeat DIPG has also supported several projects related to CAR T-cell therapy, including work from one of the world’s top researchers in high-grade gliomas, Dr. Michelle Monje of Stanford University.
CAR T-cell therapy is a revolutionary process in cancer treatment that genetically alters a patient’s own T-cells to attack cancer cells. This trial has shown great promise and after decades could finally offer patients with DIPG a new treatment option for a disease that has historically proven resistant to other therapies. ChadTough Defeat DIPG has proudly funded more than $1 million to the cutting-edge work at Stanford.
“Private funding from ChadTough Defeat DIPG has enabled researchers like me the opportunity to be more nimble and pursue new ideas more rapidly,” said Dr. Monje. “CAR T-cell therapy is an incredibly promising strategy and robustly effective against this disease. It truly feels as though we are finally taking steps in the right direction to treat this terrible disease.”
This significant progress in childhood brain cancer research would not be possible without the support of ChadTough Defeat DIPG Research Partners. The foundation believes that through these collaborative efforts, the pursuit of a cure is being both amplified and accelerated.
Giving Hope to Families in the Fight
In 2022, with input from other families and clinicians, ChadTough Defeat DIPG Foundation launched a nationwide program called My DIPG Navigator. Made possible by Navigator Partners, the program provides free, individualized guidance for patients and families facing a childhood brain cancer diagnosis, specifically DIPG or DMG.
This navigation program stems from the vision of DIPG advocate Jace Ward, who was passionate about ensuring all patients had quick access to the most current information about best practices and treatment options. With years of experience in pediatric oncology, the My DIPG Navigator program’s nurses help families better understand the diagnosis and treatment options, connecting them to the right resources throughout their journey.
“ChadTough Defeat DIPG Foundation has and will continue to fund incredible research that we know will one day lead to a cure,” said Jason Carr. “But for me, being able to help make a difference right now is so meaningful. We are giving people the guidance we didn’t get to make important decisions 10 years ago, and we are so grateful to our Navigator Partners for helping us make this possible.”
Changing the Landscape of Childhood Brain Cancer
A decade ago, Chad Carr and Michael Mosier’s diagnoses ignited a profound shift in the fight against DIPG. From the depths of grief, the Carr and Mosier families channeled their pain into purpose, laying the foundation for what has become a beacon of hope for countless others. The progress achieved over these past 10 years is a testament to their unwavering dedication and the collective efforts of families, researchers, and supporters who have joined this mission. While much work remains, the legacy of Chad and Michael continues to inspire groundbreaking research, innovative treatments, and a united community committed to defeating DIPG. Their story, once defined by unimaginable loss, now fuels a movement that brings hope to the future of childhood brain cancer.
“In the past decade, we have made more progress and attracted more researchers with a pure focus on DIPG/DMG than in 100 years prior,” said Dr. Koschmann. “ChadTough Defeat DIPG has been absolutely essential to these changes and to the next phases of our progress. We are so honored to have worked with the Carr and Mosier families on this journey and continue to feel the love from Chad and Michael every day.”
