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Childrens Brain Tumor Research Foundation

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This organization's nonprofit status may have been revoked or it may have merged with another organization or ceased operations.

Community Stories

1 Story from Volunteers, Donors & Supporters

9 aidensmother

Board Member

Rating: 5

When my son Aiden was diagnosed with ATRT, a rare pediatric brain tumor there was VERY little information available through hospitals, books or the web. Children's Brain Tumor Research Foundation connected me with other parents of children diagnosed with this disease and connected me to the Doctor that discovered Aiden's type of cancer. In times of deep despair this organization gave me knowledge and a sense of control over Aiden's treatment. This organization has virtually no overhead, these people are here because they really care about your child. I remember one night 2 months into treatment, Aiden was in the ICU after a seizure and the doctors wanted to change the course of treatment. I was scared and sitting in ICU next to my two year old baby. I contacted CBTRF and within a day they gave me information on several different drugs and treatments that previous parents had used in my situation. When I met with the doctors I was able to participate and come to a decision.When your child is diagnosed with a rare brain tumor you can feel so alone, CBTRF made me feel like I had a team rooting for my child.