We are the parents of a sweet boy, Zion, whose life was cut short by a very rare and aggressive brain tumor known as Atypical Teratoid Rhabdoid Tumor (ATRT). Zion was diagnosed with ATRT just before his third birthday.
As a doctor in the field of cancer research, I felt I would understand the complexity of treating this rare disease - but as parents, my wife Jaymi and I were devastated and confused by the limited and outdated options we were offered. We had many questions and felt lost on where to begin. We quickly realized how few resources were available for this rare brain tumor.
Hope4ATRT Foundation is a research entity of Out of Zion Inc, dedicated to supporting families in the fight with up-to-date resources and research. Our mission is to provide a centralized site where parents can find the information they need to navigate their child's diagnosis - what to do, where to go for treatment, what resources/support are available to them, and advancements made through ATRT research.
Dr. Kosj & Jaymi Yamoah, Zion's Parents
Co-Founders of Hope4ATRT