Gift from a Child … for a child
Empowering Brain Cancer Research Through Tissue Donation
Gift from a Child … for a child
Empowering Brain Cancer Research Through Tissue Donation
When a child’s life ends too soon, donating tissue is a way for the child and family to take a final stand against cancer. Tissue donation is a contribution that improves outcomes for children with brain cancer that only families can make.
Stalled Research, Lagging Advancements & Increased Fatality Rates
Brain cancer has overtaken leukemia as the leading cause of cancer-related death for children. The reason children succumb to their cancer will remain a mystery until researchers are able to study both the diseased and healthy brain tissue of those children who do not survive their disease.
Leukemia is a blood disease and it is fairly simple to obtain blood samples to fuel research. It is not easy to obtain tissue samples when the disease is in a child’s brain.
“Several decades ago childhood leukemia was a near universally fatal disease and now over 90% of children who have childhood leukemia survive because of enormous strides forward based on great research and clinical trials. Unfortunately, brain cancer is now the number one cause of death by disease in children.”
– Dr. Michelle Monje, Neuro-Oncologist, Stanford Health Care
It is not easy to obtain tissue samples when the disease is in a child’s brain. Tissue samples can be obtained during a craniotomy, a complex surgery to remove the tumor from the brain; samples can be obtained through a biopsy which also can be complicated and pose risks for the child; and samples can be obtained at the time of death through an autopsy.
Tragically, one-in-five children who are diagnosed with brain cancer, die from their disease; and sadly, researchers and physicians do not know why the treatments do not work for these children. Until researchers are able to study the brain tissue of children who do not survive their cancer, it will remain a mystery why these children do not survive their disease.
When a child’s life ends too soon, donating tissue is a way for a family to take a final stand against cancer. Many families have reported their decision to donate their child’s autopsy tissue was one of the few positive steps they could take during those final tragic days. Tissue donation is a contribution to improving outcomes for children with brain cancer that only families can make.
A Simple Two-Step Process
For the family, once a decision has been made to donate, only two things are required. The first is written consent for the child to become a tissue donor, and the second is a single phone call to a tissue navigator at the time of a child’s death to initiate the process.
Written Consent
Written Consent
A Single Phone Call
A Single Phone Call
If you would like to speak with a family that has donated their child’s tissue you can reach out to one of our family companions. Information is available on our Family Companion Page.
Our Founding Families Share What Donating
Their Child’s Tissue Has Meant to Them.
She Has Wanted to Start a Family Companion Program Since She Lost Her Son.
Family Donation Stories
Blog Feature
Charlie
Forever 17
Jennifer
Forever 6
Groundbreaking Advancements at the Children’s Brain Tumor Network
Gift from a Child (GFAC) and the Children’s Brain Tumor Network (CBTN) work together to help create a world where no family is faced with the devastating reality of an incurable brain tumor. CBTN supports GFAC’s mission to provide families and children with the opportunity to advance pediatric cancer research through the incredible gift of brain tissue donation. The Swifty Foundation, funder of GFAC, sits on the CBTN Executive Council.
Superhero Julian
Julian Roque was diagnosed with diffuse intrinsic pontine glioma (DIPG) when he was just two years old. DIPG is an aggressive, fast growing tumor that appears in the brain stem and is considered a terminal diagnosis. Julian passed away in 2018, four years after his diagnosis. Since Julian’s passing the Roque family has been dedicated to raising awareness of DIPG with the goal of ultimately curing this disease.
Julian’s family made the courageous decision to donate his tumor to research and have since become advocates for tissue donation. In an interview about the impact tissue donation has had on their family Julian’s dad said “Julian knew that his donation was going to be meaningful. It made him happy. He knew that by donating his tumor that his friends might be saved some day.”
Gift from a Child
Is a Swifty Foundation Program
Swifty is a recipient of the GuideStar Gold Seal of Transparency
