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An EPICC Outcome for One Little Girl

May 23, 2023
4 min read
Little girl affected by cancer poses in front of flowers.

Mary was 4 years old when she was diagnosed with a pediatric brain tumor called DIPG (diffuse intrinsic pontine glioma). This extremely aggressive and difficult-to-treat tumor strikes at the base of the brain. Children rarely live more than six to nine months after a DIPG diagnosis, and during that time they lose the ability to walk, talk, see, hear, and eventually breathe.

But Mary was patient #007 on a clinical trial that your donations made possible. This trial is run by a research team that began as the Pediatric Cancer Dream Team in 2013, co-funded by the St. Baldrick’s Foundation and Stand Up To Cancer.

Today that research team continues with a fitting new name: The St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer). Their groundbreaking research has brought together two scientific fields that had been evolving separately: genomics (the study of genes and their functions) and immunotherapy (using the body’s own immune system to attack cancer).

St. Baldrick's Foundation EPICC Team - Empowering Pediatric Immunotherapies for Childhood Cancers

EPICC Team members use genomics to discover the most strategic targets the immune system should attack, to kill cancer cells and leave healthy cells alone. Once they discover a target, the team develops weapons the immune system can use to attack them. Then the team tests these new therapies in clinical trials — like the CAR-T phase one study that Mary is on.

Mary’s own cells were altered and then given back to her, to enable her immune system to fight off cancer. She’s had more rounds of CAR-T cells than any other patient, to date.

And today, 31 months after diagnosis, Mary is seven years old. She has re-learned to walk, jump, swing and dance. She’s gone from preschool to kindergarten to first grade. She’s found a love for chapter books and Barbies, and enjoys play dates with friends.

None of this has been easy, of course. It involves far more time in the hospital than any seven-year-old should have, with frequent trips from home in Colorado to treatment in California. And Mary’s family knows she has far outlived expectations.

Her mom Kristin says, “We spend each day trying to pack as much life and joy as we can into it, no matter the cost, because we never know what the next hour, minute, day, week, month will bring… We live day by day, but research has given us time and hope, which is everything.”

Little girl with cancer hugs her mom at Disneyland.

Mary enjoying a special moment with her mom.

Mary is just one of more than 1,250 children who have participated in EPICC Team clinical trials. These are children fighting many types of childhood cancer. Immunotherapies have proven most successful in blood cancers, and that work continues. But the EPICC Team is focusing also on the more difficult solid tumors – not only DIPG and other brain tumors, but also Ewing sarcoma, neuroblastoma, rhabdomyosarcoma, Wilms tumor, and more.

The word “epic” implies something that is historically important, lasting and complex, something that surpasses the ordinary. That certainly applies to the work of this team.

The American Association for Cancer Research (AACR) awarded the team (then known as the St. Baldrick’s Foundation – Stand Up To Cancer Pediatric Cancer Dream Team) its 2021 Team Science Award. “From establishing novel immunotherapies for pediatric cancer, to giving hope to thousands of children and their families through the clinical trial network it established,” said Margaret Foti, PhD, MD, chief executive officer of the AACR, the team “has made incredible advancements in pediatric cancer research.”

The impact of this research on Mary’s life is certainly epic. And it’s also a great word to describe the impact of every dollar donated to support this research and so many other lifesaving research projects.

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