"I don't want this to happen to anyone else."

Carol DeBacker was just 61 years old when she succumbed to neuroendocrine cancer in 2020 after a seven-year fight against the illness. But the avid sailor and dog lover left behind a remarkable legacy that is fueling NET research today.

“She was a very practical person, and she was very direct as to how she expected her estate to be managed,” explains Tom Burke, Carol’s brother-in-law and administrator of The Carol DeBacker Charitable Trust.

“I’m a retired CPA and she trusted me to handle the money from her estate. Carol was very intelligent, an engineer who worked in several fields. She understood the power of knowledge, and her passion was the research. She wanted to be a part of figuring out this horrible cancer, how it acts, and how to treat and cure it. I remember her saying, ‘I don’t want this to happen to anybody else’,’’ adds Tom.

Carol with her nephews

Carol’s legacy is doing just that. The Carol DeBacker Charitable Trust made its first gift to NETRF in 2021, with subsequent gifts in 2022 and 2023 totaling a remarkable $670,000. The Trust sponsored the 2022 NETRF Pilot Award to Dr. Po Hien Ear, who is studying the relationship between serotonin and the aggressive behavior of small bowel NETs, which was Carol’s primary site. The outcomes from this work could, in the future, be applied to other serotonin-producing NETs, such as lung NETs, as well.

“Our family’s goal is to fund the work that will accelerate the research and discovery process,” explains Tom. “So, when NETRF approached us last year with two highly recommended proposals focused on the type of NET that Carol had, we knew she’d want us to support this work. She wanted to be part of the solution.”

In 2023, The Carol DeBacker Charitable Trust funded two NETRF Research Awards, a Mentored Research Award led by Dr. Elham Barazeghi at Uppsala University in Sweden and an Investigator Award led by Dr. Jeffrey Frost at The University of Texas Health Science Center. Dr. Barazeghi is using advanced sequencing technologies in small intestinal neuroendocrine tumors (SI-NETs) to understand what happens in a primary tumor to make it metastasize. Dr. Frost is experimenting with a specific drug to target and kill neuroendocrine tumors.  

“Carol didn’t have any children and just one sibling; my wife and our three sons are her only family,” Tom says. “So, when I received a report from NETRF and can point to research that was funded by Carol’s Trust, I sent that to all of them, and that really meant a lot to each of them to see that The Carol DeBacker Trust funded significant, meaningful work to combat this awful disease. It gives us all some hope and joy to know that she is making a real difference.”