Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of patient families, clinicians and researchers in “Collaborative Corner” to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Mary Brandle, Christopher’s mother, Secretary of Christopher Brandle Joy of Life Foundation
This past year should have been a year of milestones; senior year of high school, college applications, prom, graduation and the beginning of a new college journey. Instead, we spent the last year dreading these milestones because each one was a reminder of what our son Christopher was missing out on.
Christopher was diagnosed nine years ago with medulloblastoma and succumbed to this horrible disease seven months later on March 31, 2010 at age 10. The Christopher Brandle Joy of Life Foundation was formed the day after Christopher passed away and our mission is to raise funds for pediatric brain tumor research primarily focusing on medulloblastoma. We also provide financial assistance to families caring for a child with a brain tumor.
Our milestones are now measured in the successes of our foundation. Our first fundraising event was held six months after the Christopher Brandle Joy of Life Foundation was formed. It was a family day with a band, games and barbeque with over 1000 people in attendance. We wanted to plan a day that Christopher would have loved and give back to the community, families and friends whose support was immeasurable during Christopher’s treatment and the months that followed his passing. We were blessed with a beautiful, sunny, blue skied day. Six months later we held our first Casino Night fundraiser. This has become our main fundraiser and we have held a casino night each year since 2011. We decided early on that we wanted our events to be fun, but at the same time remind our attendees why their support is so critical, since the majority of pediatric brain tumor research funding comes from organizations like ours. Two years ago we added a wine tasting fundraiser. So far, it has been a well-received event which we hope to grow each year.
Like many foundations, The Christopher Brandle Joy Life Foundation is a small organization consisting of just an executive board and a group of devoted volunteers. Since we are so small, we do not have the resources necessary to find valuable research projects on our own. We are fortunate to have established relationships with other organizations such as the Pediatric Brain Tumor Foundation and the Children’s Brain Tumor Foundation. In 2017 we joined the Children’s Brain Tumor Tissue Consortium Advisory Council. These relationships have allowed us to fund very relevant research grants and work together with groups whose goals and missions align with our own.
Pediatric brain tumors are the leading cause of death among all pediatric cancers, yet research is grossly underfunded. The Christopher Brandle Joy of Life Foundation, along with the CBTTC, is working towards creating greater awareness and providing the means for advancement in research. We are hopeful that all of the milestones along the way will one day lead us to finding a cure so children no longer have to suffer.