NORTH ADAMS — Anna Yan Ji Arabia died in 2013 at age 16, a beloved daughter, a popular student, and a best friend to her dog Ayla.

The cancer that robbed Anna of her life is among the rarest, a brain cancer named gliomatosis cerebri. At the time of Anna's diagnosis in 2009, there were no treatments, no protocols, and no research about the cancer, said Kathy Arabia, Anna's mother.

Information about all childhood cancer research is bleak: Only 4 percent of the National Cancer Institute budget is designated for childhood cancer research and only three drugs have been developed for childhood cancers in 30 years, Arabia said.

There are childhood brain cancers, including the type that impacted Anna, with survival rates near zero.

"It's totally unacceptable," she said. "It is true that there are more adults with cancer than there are children. But when you add up the years of life expectancy that are lost, that's when you really see the difference, the inequity."

On Saturday, the AYJ Fund, a foundation launched by Anna's parents, will host a cornhole tournament beginning at Noel Field. There will be a children's cornhole game as well as other games and people will be able to use oversized picture frames and props to capture their own photographs. There is a $100 cash prize for the winner.


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The foundation has three key components: "Smile" funds trips or special events for Northern Berkshire and Southern Vermont children diagnosed with any type of cancer; "Connection" supplies teenaged cancer patients with items such as tablets allowing them to maintain friendships and academic studies; and "Cures" is focused on gliomatosis cerebri.

The couple's efforts with this endeavor led to the March 2015 First Annual International Conference on Gliomatosis Cerebri at Institut Curie hospital in Paris.

They family was dismayed by the very limited treatment options available for Anna, Arabia said.

"We could not believe that there was no research, no protocols, for her type of cancer," she said.

She and her husband, Joseph, began researching everything they could find about the cancer, and kept in frequent contact with Anna's doctor at Dana-Farber, Dr. Mark Kieran. Kieran met with the Arabias and together they made certain that they were following any and all research about the disease.

"Then in 2014, Dr. Kieran said it was time for a conference," Kathy Arabia said.

Because of the Arabias' efforts, Kiernan connected with other doctors interested in the cancer, including Dr. Andres Morales from Barcelona, Spain and Dr. Jeffrey Greenfield from the New York-Presbyterian/Weill Cornell Medical. Also participating in the conference were Elizabeth's Hope; The Joshua Bembo Project; Izas, La Princesa Guisante; and Franck.

Massachusetts College of Liberal Arts alum, Dr. Katherine Foster Warren, who now is the head of the Pediatric Neuro-Oncology division of the National Institute of Health National Cancer Institute's Clinical Center in Bethesda, Md., attended the conference as well. Warren graduated in 1982 when the college was known as North Adams State College.

"Doctors started talking, families started connecting," she said. "Since the conference, research is being done at Weill Cornell and the Institute of Cancer Research (London)."

Kathy and Joseph said that they visit medical labs and witnessed the research at Weill Cornell.

"Part of doing research is collecting (cancer) cells and watching them divide and trying different things on the cells to see what has an effect," she said. "The last time we were at Weill Cornell, we saw the cell lines growing."

An increased focus on brain cancer means more hope, they said.

"This work will lead to treatments and cures," Joseph said.

Until there is a cure or treatments that make cancers such as gliomatosis cerebri manageable, their work will not stop, the couple said.

"The work we are doing, I know we are touching a lot of people," Kathy said.

Said Joseph: "This is our mission til the end of our days."

If you go ...

What: Cornhole tournament to benefit AYJ Fund for brain cancer research

When: Noon Saturday

Where: Noel Field, North Adams

Registration: $10 per person; $20 per team at www.AYJfund.org, the AYJ Facebook or at 413-652-1602