On New Year’s Eve 2010 our lives took an unimaginable turn: A doctor told us that our seemingly healthy 19-year-old daughter, Elizabeth, had inoperable brain cancer. We were advised to take her home, find palliative care, and expect her to succumb to her disease within the year. Words cannot describe our devastation, despair, and anger. How is it possible in this day, when we send space probes to the edge of the solar system and develop driverless cars, that there can there be no effective treatment options? There was literally no hope—only prayers for a miracle.
In November of 2011, while under hospice care, Elizabeth, along with her family and Dr. Jeff Greenfield, launched Elizabeth’s Hope, an effort to raise funds for research on rare and inoperable pediatric brain tumors—an area of inquiry largely ignored by the pharmaceutical industry and the government. Friends, family, and even strangers responded, and the cornerstone for the Children’s Brain Tumor Project was laid.
Five years ago, we hoped that our effort would translate into something meaningful. Thankfully, it has. The Children’s Brain Tumor Project is now a well-recognized collaborative leader in the field.
Today, while there are still no cures, I am proud to say that there are real glimmers of hope on the horizon thanks to work of the CBTP. Among the promising new approaches is a novel drug delivery system for pediatric brain tumors pioneered by Dr. Mark Souweidane. In addition, with the move into permanent lab space the doctors are now able to grow pediatric brain cancer cell lines and test different drugs and drug combinations against the tumors in both petri dishes and in mice.
The promise of personalized medicine is becoming a reality. Dr. Greenfield and his team are working closely with the new Precision Medicine Institute at Weill Cornell to sequence every pediatric brain tumor treated there. Samples of these tumors are now implanted into animal models, meaning a mouse can have not just a brain tumor but a specific child’s actual brain tumor. That mouse could then be treated with the most promising drug based on genomic testing, and if it proved effective the child could receive that same drug. We are not there yet, and many obstacles remain, but it’s exciting to see the promise of personalized medicine developing right before our eyes.
Over the last 15 years there have been dramatic improvements in the treatment of other childhood cancers, namely leukemia. It is our expectation that the same will be true of brain cancer in the coming years.
Importantly, the donor base of the CBTP continues to grow as more families—in grief or hope—commit to the effort. The work truly is “powered by families.” In fact, over the last five years, we have grown to nearly 30 families and well over 3,000 supporters, who together have raised three and a half million dollars to power the research.
The groundbreaking discoveries of the doctors and researchers are the direct results of the generosity of you, the donors, who make the work possible. This is the good news. The new challenge is to keep the dollars coming so that existing research projects can be completed and new lines of inquiry can be explored.
Five years ago friends, family, and strangers responded to Elizabeth’s request and helped launch this significant project. Today we ask you to continue to support the CBTP, as we are on the cusp of bringing real, tangible hope to young brain cancer patients and their families.
The Minter family is forever humbled by the generosity and love bestowed on us and thankful for the many courageous brain cancer families who are taking a lead in ensuring the continued success of the CBTP. Please consider making another gift today.