A Decade of Progress: Honoring Chad’s Legacy and Fueling Hope for Families
In September 2014, Jason and Tammi Carr heard the unthinkable: their 3-year-old son Chad had been diagnosed with diffuse intrinsic pontine glioma (DIPG) — an aggressive and incurable brain cancer. Given just nine months to live, Chad’s diagnosis launched the Carr family into a world of heartbreak and uncertainty.
At the time, DIPG treatment hadn’t progressed in decades, and the only standard option — radiation — offered temporary relief at best. The Carrs turned to experimental therapies in hopes of gaining more precious time. Outraged by the lack of government funding for such a deadly disease, they vowed to make a difference.
From that vow, the ChadTough Defeat DIPG Foundation was born. Since 2015, the foundation has raised and committed $36 million to research, supporting 90 researchers across 44 institutions worldwide. Through innovative grant programs, it continues to drive promising science forward while also supporting families through initiatives like My DIPG Navigator, a free service offering personalized guidance after diagnosis.
Then and Now: The State of DIPG Research
When Chad was diagnosed, DIPG was virtually untouched by modern science. Today, thanks to research funded in part by ChadTough, the landscape is changing. DIPG and its broader classification, DMG (diffuse midline glioma), are now better understood, allowing researchers to explore targeted treatments based on genetic makeup.
“This disease used to feel like a dead end,” said Dr. Carl Koschmann of the University of Michigan. “Now, we have options like ONC201 and CAR T-cell therapy, better diagnostic tools, and a growing network of support for families.”
Dr. Michelle Monje at Stanford University, one of the world’s top high-grade glioma researchers, has led groundbreaking work on CAR T-cell therapy, an immunotherapy that reprograms the immune system to attack cancer cells. This year a CAR T-cell trial opened at the Chad Carr Pediatric Brain Tumor Center at the University of Michigan — bringing cutting-edge treatment closer to home.
“We believe CAR T-cell therapy will play an increasingly vital role in treating DIPG/DMG,” said Dr. Koschmann. “And we couldn’t have opened this trial without ChadTough’s unwavering support.”
Fueling Research, Inspiring Change
ChadTough’s grant programs are designed to inspire brilliant minds to focus on DIPG/DMG research. From Fellowship Grants for early-career scientists to New Investigator Grants for those launching independent labs, each award is carefully reviewed by the foundation’s Scientific Advisory Council, chaired by Dr. Suzanne Baker.
“These grants allow us to fund bold, creative ideas from scientists at all career stages,” Baker said. “It’s how breakthroughs happen.”
The foundation has also united a strong network of more than 40 Family Partners, each of whom helps fundraise and amplify the mission in honor of their own children. Together, they are building a community of support and momentum.
A Legacy of Impact
What began as a mission rooted in grief has grown into a movement filled with purpose. Over the last 10 years, ChadTough Defeat DIPG has helped change the narrative around DIPG — from hopeless to hopeful.
“Chad’s story now represents more than just loss — it’s a story of impact, progress, and unwavering determination,” said Tammi Carr. “And we’re just getting started.”
This May, the foundation will host its annual ChadTough Defeat DIPG Gala, a night to honor the children who have faced brain cancer and fuel the mission forward. The event includes an impressive online auction, which opens to the public on May 3, featuring one-of-a-kind items, vacation packages, and sports memorabilia.
“It’s a meaningful way for anyone to support this cause,” said Tammi. “Every bid brings us closer to a cure.”
To learn more and get involved, visit ChadTough.org.
