Family Corner: Kathy Arabia

It is always a heartwarming and emotional experience to meet with other families who have lost a child to brain cancer. I had the true pleasure to connect with a group of parents, all of whom had lost a child to the rare brain cancer gliomatosis cerebri, at the Second International Gliomatosis Cerebri Conference, which was recently held at the National Institutes of Health.

The powerful emotions we felt were highlighted by the fact that we were there with a number of the brightest neurosurgeons, neuro-oncologists, researchers, and others who were fully committed to learning more about this cancer, sharing research, and finding effective treatments so no other families would have to go through such a loss.

This conference included presentations on GC research from a number of European countries as well as Canada and across the United States. Dr. Jeffrey Greenfield spoke of his research on the invasive growth pattern of gliomatosis cerebri, and the work being done in his lab to test biopsy tissue cells with a number of drugs to find potential treatment options for patients.

After losing our 16-year-old daughter, Anna Yan Ji, to gliomatosis cerebri, we became committed to supporting research and created the AYJ Fund. We are grateful that Weill Cornell Medicine, Dana-Farber Cancer Institute, National Institutes of Health, and others in the United States as well as a number of hospitals across Europe are now actively studying this disease. This conference brought physicians and researchers together with families from around the world to share their research, collaborate on projects, and to identify a plan to move GC research further.

Thanks to Elizabeth’s Hope, The Children’s Brain Tumor Family Foundation, Kelly and Kyle Fisher, the Joshua Bembo Foundation, and the AYJ Fund, as well as foundations from Peru and across Europe, for sponsoring this important conference.

The challenges are many, and more funding is critical, but research is moving forward and we are grateful to be part of this important team making a difference for gliomatosis cerebri.