Tampa, FL – Two local foundations have joined forces with the Children’s Brain Tumor Network (CBTN), the largest pediatric brain tumor biorepository on Earth, to fund cancer research, to find cures and better treatments for kids with cancer. Donations from patients’ brain tumor tissue and other biosamples allow scientists to carry out research that will enable them to better understand how to target and treat pediatric brain tumors. This collaborative resource is shared with researchers and scientists around the world.
The funds raised by Cure Kids’ Cancer NOW! Foundation (Tampa), and Hope4ATRT (Tampa) will provide much-needed support for children’s brain tumor research. Specifically of interest is the central nervous system atypical teratoid/rhabdoid tumor (AT/RT). AT/RT is a rare, fast-growing tumor of the brain and spinal cord. It usually occurs in children ages three years and younger. About half of these tumors form in the cerebellum or brain stem. The cerebellum is the part of the brain that controls movement, balance, and posture. The brain stem controls breathing, heart rate, and the nerves and muscles used in seeing, hearing, walking, talking, and eating, making AT/RT more challenging to treat. AT/RT may also be found in other parts of the central nervous system (brain and spinal cord).
Title and Amount of Funding: Total Awarded - $25,000
Out of Zion Award Program through Hope4ATRT Foundation - $12,500
Cure Kids’ Cancer Now! - $12,500
Purpose of Fund:
This fund is established to support Whole Genome Sequencing (WGS) of AT/RT. There are currently 11 AT/RT cell lines that need WGS. These funds are estimated to cover the cost to sequence all 11 tumor cell lines.
About Cure Kids’ Cancer Now!
Cure Kids’ Cancer Now! is a foundation determined to support families who are in the fight against kids’ cancers.
The Angel family formed Cure Kids’ Cancer NOW! Foundation in August 2016 in honor and memory of Emmi Grace Angel – their 5-month-old daughter who tragically died after only two short months of intensive treatment for AT/RT brain cancer. While Emmi Grace received the best possible care, her team was ill-equipped to treat her due to the outdated treatment options available. Knowing that more research dollars were needed to prevent tragedies like this from continuing, Cure Kids’ Cancer NOW! began with a primary focus of funding innovative research for less toxic treatment options designed specifically for children’s bodies.
According to Executive Director and Emmi Grace’s mother Monica Angel, “Yes, we know that our efforts can do nothing to bring back our child, but we work to do everything we can to save yours. Cure Kids’ Cancer NOW! and Hope4ATRT are aligned in our goal to provide meaningful research to ultimately cure AT/RT. We cannot unknow the pain of watching our children suffer so we work to ensure that no other children will have to endure such loss”
Cure Kids’ Cancer Now! Foundation has 3 missions:
- To fund research designed to treat kids’ brain cancers, especially AT/RT.
- To send kids with cancer “Home for the Holidays” in honor of Emmi Grace’s birthday.
- To educate about the truth of kids’ cancers.
To learn more visit www.curekidscancernow.org, and connect on Facebook, Twitter, and Instagram.
Hope4ATRT was started to honor a young boy, Zion Yamoah. His dad, Dr. Kosj Yamoah, had this to say: “Having been trained in the field of both adult and pediatric oncology, I felt I would understand the complexity of treating this rare disease. But as parents, my wife Jaymi and I were both devastated and confused by the limited and outdated options we were offered. We had many questions about what to do, where to go, what trials were available, or what resources were out there. In the process of searching we quickly realized how few resources were available for this rare brain tumor.”
Zion passed away on July 7, 2016 after a 15-month battle with AT/RT. His love of music and bright spirit inspired his parents, their family, friends and community to continue to fuel research.
Hope4ATRT is a research entity of Out of Zion Inc., dedicated to directing resources and research to families in the fight. Hope4ATRT provides a single dynamic site where parents can go to find all the information they need to navigate their child's diagnosis, to know exactly what to do, where to go for treatment, and what resources are available to them. The organization has experts in the field that make sure parents have the relevant information they need, presented in a way they can easily understand.
Hope4ATRT provides resources to parents, as well as supports ATRT research. Partnering with organizations like the CBTN ensures research can happen even faster.
To learn more visit www.hope4atrt.org, and connect on Facebook and Instagram.
About Children’s Brain Tumor Network
Brain tumors are the leading cause of disease-related death in children; the CBTN won’t stop until every child is cured. Formerly known as the Children’s Brain Tumor and Tissue Consortium (CBTTC), the Children’s Brain Tumor Network is transforming cancer research by using data to discover better treatments and cures for children diagnosed with pediatric brain tumors. Breakthroughs are made possible through the teamwork and collaboration of doctors, researchers, and patients.
Since 2013, CBTN has collected over 45,000 biospecimen samples from more than 3,500 patient subjects. These samples allow researchers to identify better testing, treatments and outcomes for children diagnosed with pediatric brain tumors and other devastating diseases.
To learn more about the Children’s Brain Tumor Network, visit cbtn.org/about-us, and connect on Facebook, Twitter, or YouTube.