Our Story

jordan

The Canadian Children’s Brain Cancer Foundation was established in honor of Jordan Feradi, a highly active, sports crazy boy who made friends easily and had a very caring nature about him.

In February 2012 he was diagnosed with diffuse intrinsic pontine glioma (DIPG), an inoperable malignant tumor located in the brainstem.

During his eight month battle Jordan fought with courage and determination like no other. He suffered through the effects of the tumor, painstaking treatment and devastating side effects. Despite this he still found ways to make each day as positive as it could be.

Jordan became a pioneer in cancer research. His legacy represents a paradigm shift in the treatment of pediatric brain tumours, specifically DIPG. Although radiation was successful in reducing the tumor it became apparent that the chemotherapy clinical trial treatment he initially participated was ineffective. Jordan’s parents elected to remove him from the trial and embark on a new journey. Jordan travelled to the Memorial Sloan-Kettering Cancer Center in New York City and became one of the first children to receive treatment through a surgical technique known as convection enhanced delivery, a targeted therapy that bypasses the blood-brain barrier and delivers a radioactive monoclonal antibody directly to the tumor within the brainstem. Although the surgery was deemed a clinical success, the drug did not have time to combat the aggressive nature of the tumor. Jordan passed away about a month after the procedure at the age of eight years old.

Even after his passing Jordan’s contribution to finding a cure for DIPG continued. His tumor tissue helped researchers at Toronto’s Hospital for Sick Children shed new light on the genetic drivers for DIPG. The results from the study showed the distinctions between adult and pediatric brain cancers, which will impact how new drugs to treat DIPG are developed.

Jordan’s competitive spirit and willingness to fight against his disease came at great sacrifice. Instead of peacefully living out his days surrounded by his family, friends and his beloved dog, Ginger, he helped change how pediatric brain cancer research is viewed. No longer are adult chemotherapies used in clinical trials to treat children with brainstem tumors. No longer is DIPG considered inoperable. Researchers now focus their efforts on targeted therapies thanks to information gained from tumor tissue donations.

Jordan’s life on earth was far too short but the legacy he left behind was impactful. He started the quest to find a cure for childhood brain cancer; it is now up to us to finish it.