This Life with Gracie: Couple turns spotlight on childhood brain tumors

Nearly 13 children in the United States are diagnosed with a brain tumor every day. It’s estimated 30,000 children are living with brain tumors, according to the Pediatric Brain Tumor Foundation. Of those, nearly 1,500 will die.

And yet, only about 4 percent of government funding for research is earmarked for pediatric cancers, with less than 1 percent going toward pediatric brain tumor research.

Those stats weighed heavy on Phil and Cheryl Yagoda of Sandy Springs as the couple sat on a plane, still on the tarmac, waiting to fly home from New York in fall 2006.

The couple had been on a whirlwind tour talking to doctors and visiting hospitals, trying desperately to figure out the best course of action for their son, Ian.

Ian was barely a year old when Cheryl Yagoda noticed he wasn’t hitting growth milestones.

“When other kids were walking he was just learning to sit up,” she said recently. “He was having a hard time swallowing and his motor skills were off.”

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Doctors assured her Ian was fine, but the Yagodas finally found a doctor to take their concerns seriously. That pediatrician ordered a CAT scan and MRI. The CAT scan showed nothing out of the ordinary, but a month later, when he had the MRI, the news was different.

There was something on the 16-month-old’s brain stem.

“That’s when our lives changed forever,” Phil Yagoda said. “I left the room and started calling every doctor I knew.”

The Yagodas were then shuttled across the street to see a neurologist, who ran more tests. Ian had an inoperable tumor called Type II astorcystoma.

The Yagodas had just finished their last hospital tour when it hit them, they had to do something.

“Every time we went to a hospital, people would say there is research being done but not enough,” Phil said.

And when he asked if that were because of a lack of money or brain power, the answer was always the same: lack of money.

The Yagodas couldn’t wrap their heads around that. After all, brain tumors were the leading cause of death from disease in children.

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“How was that not important enough to put major federal money behind?” Phil Yagoda asked.

As soon as they arrived home, the couple began debating whether to join an existing foundation or form their own. Choosing the latter, they put together a board and met with community members about how to proceed. They decided their mission would be to raise awareness about childhood cancer and to fund and fast-track innovative therapies and treatments for pediatric brain tumors at hospitals and research labs nationwide. They founded the non-profit Ian’s Friends Foundation.

The foundation, which will host its 10th annual Evening of Inspiration Nov. 18 at the Intercontinental Hotel in Buckhead, has since raised more than $10 million to fund 17 ground-breaking research projects at 10 world-renowned U.S. institutions, including Children’s Healthcare of Atlanta, which houses the Ian’s Friends Foundation Brain Tumor Biorepository.

The biorepository, which opened in 2014 at Scottish Rite, provides the technology to grow and store cancer cells for use in critical brain tumor research across the country.

And just last month, the foundation hosted its inaugural WhatIFF Symposium, a “Shark Tank” style forum during which nearly 40 renowned clinicians and researchers presented their ideas for life-saving research, methodologies and treatments for pediatric brain tumors. Three of those will receive up to $125,000 each from IFF in 2018.

RELATED: New cancer therapy program opens at Children’s Healthcare of Atlanta

All this just because 10 years ago, doctors told the Yagodas their son wouldn’t live to see his 13th birthday.

They were wrong.

Last July, more than a dozen family members gathered in Israel to celebrate Ian becoming a teenager and to witness his bar mitzvah.

That doesn’t mean Ian has benefited from the research his foundation has helped fund. He hasn’t. He still has a tumor that has to be checked every six months, but his condition is stable.

“He plays basketball and ultimate Frisbee,” his mother said. “He has challenges. Sometimes his gait is off. He has horrible headaches and trouble sleeping, but he lives a completely full life.”

In many respects, they say, Ian is a miracle.

And his parents are a godsend, but they aren’t taking any of the credit, not for Ian or the work the foundation has done to raise awareness about pediatric brain tumors.

“If a cure ever comes from this, it’s not because of Phil and Cheryl Yagoda,” they said. “It’s the Atlanta community.”

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