Millions granted for childhood brain cancer research through ChadTough Defeat DIPG Foundation

Chad Carr, 5, died from DIPG in 2015
Posted at 11:22 AM, Jun 06, 2021

(WXYZ) — May was a big month for theChadTough Defeat DIPG Foundation; it granted more money for research than it ever has before.

$3.5 million in grants were awarded to several researchers at institutions around the world including:

  • Marta Alonso, Universidad de Navarra (Spain)
  • Pratiti Bandopadhayay, Dana-Farber Cancer Institute
  • Tim Phoenix, University of Cincinnati
  • Sriram Venneti, Michigan Medicine
  • Sujatha Venkataraman, University of Colorado.
  • Jessica Blackburn, University of Kentucky
  • Michael Koldobskiy, Johns Hopkins University
  • Giedre Krenciute, St. Jude Children’s Research Hospital
  • Vivekanand Yadav, Michigan Medicine

DIPG, which stands for Diffuse Intrinsic Pontine Glioma, is a tumor found in the bottom part of the brain. These tumors are fast-growing and inoperable. They account for about 10 percent of all childhood brain tumors but make up 50 percent of childhood brain cancer deaths.

It's a cause very close to the heart of Jason and Tammi Carr, who lost their son Chadto DIPG back in 2015.

“He was a healthy boy one day, we thought he had a concussion from a fall and then next thing you know you’re being told he has probably about nine months to live," Tammi, a co-founder of ChadTough Defeat DIPG Foundation, told Action News.

That was in September of 2014. 14 months and 30 rounds of radiation later, 5-year-old Chad passed away.

He spent his fourth birthday inside the Coach Carr unit of Mott Children's Hospital in Ann Arbor, named for his grandpa, former University of Michigan football coach Lloyd Carr.

“This is the one diagnosis in pediatric oncology which when you see the imaging your heart sinks," said Dr. Stephanie Toll, a pediatric neuro-oncologist at DMC's Children's Hospital of Michigan.

That's because of where the tumor sits, Dr. Toll says. It's in the pons of the brain.

“The pons is an integral part of your breathing center so you can’t surgical take it out," Dr. Toll told Action News.

It's still unclear what causes DIPG, the same tumor that took Neil Armstrong's daughter Karen in 1962.

Prior to Chad's diagnosis, “I had never heard of DIPG before," Tammi said. "And that’s a problem. Because pediatric brain tumors are the leading cause of cancer death in kids.”

Which is why she's made it her mission to find answers, so that other families can find hope. The ChadTough Defeat DIPG Foundation is the result of the merging to the efforts of two families; the Carrs and the Mosiers, who also lost their son to the disease.

In early 2021, The ChadTough Foundation and Michael Mosier Defeat DIPG Foundation united to become the ChadTough Defeat DIPG Foundation.

“I think it’s baby steps," Tammi said.

"I tell people all the time this is a marathon not a sprint. And we’re going to fund the best research wherever it is. From the University of Michigan to Dana Farber, to St. Jude to Colorado to Spain.”

Researchers believe a cure may be possible in this lifetime, something Tammi knows Chad will have played a part in.

“I think he’s very proud of us. I think he’s looking down on us from above smiling," she said.