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
SNO 2022 – GFAC Collaborators Receive Awards
Gift from a Child was well represented in Tampa, Florida at the 2022 annual meeting for the Society for Neuro-oncology (SNO). This annual meeting is the largest national gathering of neuro-oncology professionals.
The week kicked off with education sessions, co-chaired by one of GFAC’s PIs, Dr. Michelle Monje, of Stanford. The focus of her track was the intersection of neuroscience and neuro- oncology.
In collaboration with Alex’s Lemonade Stand, Swifty Foundation (funder of GFAC) co-funded one of the early career researchers, Dr. Zulekha Qadeer. Dr. Qadeer won an award for and presented her abstract titled “ DDDR-33 – Targeting TGF² pathway dependencies in group 3 medulloblastoma”.
GFAC had the opportunity to present two abstracts of our own findings. They were both presented by our scientific intern, Nicole Lyons. We were thrilled to share our latest data, that we have had 195 (now over 200) successful post-mortem brain tumor tissue donations from over 50 (now over 55) different institutions since 2019.
Overall, SNO was a fantastic opportunity to connect with neuro-oncology professionals, both familiar and new. We are grateful for the chance to share our experiences and knowledge with the larger community in the hope of helping future patients.
10 Years Later…a sad and beautiful world
My wise husband often reminds me, “It’s a sad and beautiful world.” This story is like that. It’s beautiful and sad.
You see, 10 years ago today, our son Michael donated his brain and spine to research when he died from childhood brain cancer. He came up with the idea himself, no doctor or friend suggested he help research in this way. Then, five days later my seemingly healthy mom had a heart attack at Mikey’s funeral … out of the blue she died at her grandson’s funeral lunch.
Gift from a Child
Is a Swifty Foundation Program
Swifty is a recipient of the GuideStar Gold Seal of Transparency
