Directing RESOURCES & RESEARCH to families in the fight
I am the father of a child whose life was cut short by a very rare and aggressive brain tumor known as Atypical Teratoid Rhabdoid Tumor (AT/RT). As a doctor in the field of cancer research, I have spent most of my life studying as an oncologist. Just before my son’s third birthday, Zion, was diagnosed with ATRT. 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 But as parents, my wife Jaymi and I were both devastated and confused by such limited and outdated options, we were offered.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 little resources were available for this rare brain tumor.
Why should parents and families in the fight be burdened and overwhelmed trying to access the relevant resources and research for their sick child? In addition to the initial struggle of going through Zion’s diagnosis and treatments, we also realized how so little progress has been made on effective treatments for ATRT due to the limited resources allocated to research on this disease.
Zion was treated with medications that were fifty years old because those were the only available options proven to be marginally effective.
Fifty years ago Leukemia had a very similar prognosis to what we are seeing for ATRT today. However, with adequate resources and focused attention on Leukemia through years of dedicated research, we are now seeing extremely positive outcomes.
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. Here at Hope4ATRT, we provide resources to parents, as well as support ATRT research. We have experts in the field that make sure parents have the relevant information they need and presented in a way they can easily understand.
Dr. Kosj & Jaymi Yamoah
Co-Founders of Hope4ATRT