ATLANTA — May is 'Brain Cancer Awareness' month. This year alone, 93,000 brain tumors will be diagnosed in the United States.
Brain cancer now kills more children than any other type of cancer. Every day, as many as 13 children in the U.S. are diagnosed with a brain tumor.
In 2005, Ian Yagoda's parent's, Phil and Cheryl, said they started noticing their son wasn't meeting a lot of his milestones. Phil said they took Ian to a bunch of different doctors who kept telling them everything is okay.
"My wife who is the greatest, she was like, I'm telling you there's something wrong," Phil said.
The Yagoda's scheduled a CT scan and MRI for Ian.
"First we had the CT scan, it came back perfect," Phil explained.
Phil said he and his wife almost canceled the MRI but the doctors convinced them to go ahead with it since it was already scheduled.
"That was the day that changed our lives forever," he said.
Ten minutes into the MRI, Phil said the doctor walked into their room and said, "I think we found something."
At 16-weeks-old, the doctors found a tumor in Ian’s brainstem. It's an inoperable tumor.
"It's a parent's worst nightmare," Phil explained.
The Yagoda's decided to turn their nightmare into a lifelong mission. The couple founded 'Ian's Friends Foundation.'
Phil said their mission is to, "make sure that if a parent ever hears those words again, that we think we found something, that the next line the doctor says is don’t worry we can fix it."
Phil said as they started learning more about brain cancer among children and the fact it kills more children than any other type of cancer.
Reports show 4% of federal funding allocated to cancer research is for childhood cancers and only 1% of that funding is for pediatric tumor research, which again is the number one cause of childhood death from cancer.
"It just didn't make any sense to us," Phil explained.
Since the Yagoda's founded Ian's Friends Foundation, they've raised right around $20 million which has helped support close to 30 research projects at more than a dozen institutions across the U.S. including Emory University and Children's Healthcare in Atlanta.
"We said to ourselves, we can't just sit back and wait and hope," Phil explained.
As for the Yagoda's son, Ian. He wasn't expected to attend his 13th birthday but today, he's now a senior in high school and getting ready to head off to college at the University of Michigan.
"He's like a miracle child," Phil said. He added, "He's doing great, he's thriving."
The Yagodas know this isn't the case for a lot of children which is why they say their mission is far from over.
"Someone asked once so how long are you going do to do this if Ian is doing so well now, I'm like what do you mean, until there's a cure," Phil explained.
If you'd like to help support the work Ian's Friends Foundation is doing across the country, you can donate here.
There are many ways you can also get involved and you learn about how to volunteer, tour a research lab or create your own fundraiser here.