Summer 2026
By Lisa Gregory
In 2007, Roberta and Paul Carson established the Zachary Carson Brain Tumor Fund at Dana-Farber Cancer Institute in memory of their son. Zach had bravely battled the rare, diffuse intrinsic pontine glioma (DIPG) cancer for over two years and passed away at the age of 19.
As part of their estate planning, the Carsons recently made a generous bequest of $500,000 in support of the fund. Their passion for giving was inspired by Zach’s courage and amazing inner strength. Even as he fought the highly lethal DIPG brain cancer, Zach encouraged his parents to keep moving forward to help other children like him with cancer.
At 6’5”, Zach was a big guy, charismatic, and friendly—everybody liked Zach. When he was treated at Dana-Farber and at Boston Children’s Hospital, he made friends with everyone. He also went from being a typical teenager to maturing quickly after his diagnosis.
The Carsons still remember how so many of Zach’s nurses and doctors attended his funeral and how then Dana-Farber physician-scientist Mark Kieren, MD, PhD, spoke so movingly. At that time, the funds that the Carsons raised supported the research conducted by Kieran, its principal investigator, and his colleagues.
Today, the Carsons draw hope from the significant pediatric cancer research developments at Dana-Farber. Kim Stegmaier, MD, chair of the Department of Pediatric Oncology, is the principal investigator of Zach’s fund. The Carsons recently had a wonderful visit with Mariella Filbin, MD, PhD, who is a prominent researcher working on DIPG and related diffuse midline glioma (DMG) research. Filbin highlighted important program advancements and precision medicine, including biopsies that can now identify individual genetic mutations for personalized treatment.
We are committed to supporting the advance of DIPG discoveries—we know what it can mean to families and children. It gives our lives purpose to support research that will help future generations.
Roberta and Paul Carson
There is also progress on DIPG and DMG research on the unique histone mutation (H3K27M) in brain cancer, which affects children and also occurs in teenagers and young adults. This mutation was discovered in 2013 and has become a key area of research. The H3K27M mutation is present in roughly 80-90% of pediatric DIPG brain tumors.
The Carsons said, “We are committed to supporting the advance of DIPG discoveries—we know what it can mean to families and children. It gives our lives purpose to support research that will help future generations.”