By Caroline de Lacvivier
Kathy and Joe Arabia’s daughter, Anna Yan Ji, was diagnosed with gliomatosis cerebri (GC) in 2009. When they learned there was no research being done and no effective treatments for this rare brain cancer, they set out to change this reality for other families. “I had worked in hospitals for over 25 years,” Kathy Arabia said, “and I couldn’t believe that there was no research being done.”
Just 13 years old at the time of diagnosis, Anna lived courageously with GC for three years. She was a bright, kind, and generous teen who raised money to donate bald Bratz dolls to other girls who lost their hair during cancer treatments.
Anna’s parents established the AYJ Fund in her memory, continuing her wish to bring smiles to other children with cancer. The AYJ Fund Smiles Program has provided Dana-Farber’s Jimmy Fund Clinic with holiday gift packs, craft kits, a trip to see “Wicked” on stage, group tickets to a Bruins game, and three gaming kiosks to brighten clinic visits. They also launched the Connections Program, which provides laptops and iPads to help teens undergoing cancer treatment stay connected to school, friends, and family. “As a teen, missing school and missing her friends were a huge void for Anna,” Kathy said.
“We are making great strides in developing research, and we are going to continue.”Joe Arabia
In addition, The AYJ Fund serves as a major engine for research and collaboration around the world. The fund has partnered with Dana-Farber physicians who treated Anna, and with family foundations in North America, South America, and Europe, to plan and sponsor International Gliomatosis Cerebri Conferences in Paris, Barcelona, New York City, and the National Institutes of Health in Bethesda, Maryland. These conferences are a hub for leading international specialists, including Dana-Farber’s Mariella Filbin MD, PhD, to focus on this rare disease. “We are making great strides in developing research, and we are going to continue,” said Joe Arabia.
Over the past 10 years since Anna passed, the AYJ Fund has contributed over $150,000 to gliomatosis cerebri research at Dana-Farber. This year, the AYJ Fund made a pledge of $1,000,000 to support the work of Filbin and her team, who will use the grant to collect GC tissue samples and analyze them in unprecedented detail. In addition, Susan Chi, MD, and the neuro-oncology team will offer current patients with gliomatosis cerebri advanced tumor sequencing, helping clinicians match patients to the best clinical trials for them.
“Bringing new treatments to patients with gliomatosis cerebri is a matter of utmost urgency,” said Filbin. “The AYJ Fund’s support has been critical to making that possible.”