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
McKenna Claire Foundation
After McKenna Claire Wetzel passed from diffuse intrinsic pontine glioma (DIPG), her family made the courageous decision to donate her brain and spinal cord to research. McKenna’s mom Kristine said donating McKenna’s tumor tissue “has made all the difference for us, knowing that she is still here in a sense, working to save the next child diagnosed. It has given us some peace, knowing that her death was not in vain and that our spunky, sassy, loving girl lives on to fight another day.“
Dr. Amy Smith
Dr. Smith is the Division Chief of Pediatric Hematology/Oncology and Neuro-Oncology at Orlando Health-Arnold Palmer Hospital for Children. She has spent her career caring for infants, children, and young adults fighting central nervous system tumors. Dr. Smith heads up Gift from a Child’s (GFAC) Center of Excellence as the PI at APH. Dr. Smith has this to say about GFAC, a national post-mortem brain tumor donation program,
Gift from a Child
Is a Swifty Foundation Program
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