Grand Rapids Dad Helps Annual Run Raise Money For DIPG Clinical Trials, honoring daughter

Posted at 10:30 AM, Jun 03, 2018
and last updated 2018-06-03 23:17:18-04

GRAND RAPIDS, Mich.--A Grand Rapids father on Sunday once again joined other families in fighting a rare form of childhood brain cancer. Taking part in Milan's Miracle Run.

"It gets harder and harder every year. I vowed I wouldn't run the race against last year but here I am," says Ken Buron.

Ken Buron is hitting the pavement for more than his health, he’s running for his 6-year-old daughter, Emma. Last year, Emma was diagnosed with a rare form of brain cancer called DIPG.

And though Emma lost her fight with DIPG, Buron plans to continue the battle for her.

"When my daughter was diagnosed, Milan's miracle run actually funded the research and took a biopsy sample of my daughter's tumor and we're figuring out the genomic sequence of it and if it wasn't for them we wouldn't have the ability to do so. So, instead of my daughter passing away and not having any type of hope whatsoever at least this way she didn't pass away in vain," says Ken Buron, Running for his daughter lost to DIPG.

On Sunday he ran in Milan's Miracle Run in Grand Rapids along with hundreds of others impacted by the rare cancer.

The annual event is inspired by another young child, Milan, a 7-year-old who was diagnosed with a terminal form of childhood brain cancer a decade ago.

"We were turned away and told that she had about six to ten months to live and we thought well that can't happen. We've got to take her somewhere. So, we took her across the nation to a multitude of national pediatric oncology hospitals and unfortunately told the same that there was nothing being done. So we came back to Grand Rapids and we said ok let's start," says Sharyn Capobianco, Milan's Mom.

The cancer is so rare, it receives a fraction of the funding for research given to fight other cancerS. But, Milan's Run is helping with that, raising more than 70 thousand dollars for clinical trials.

"Now, we have started clinical one trials, phase one. So we are pass the research we're in the clinical trials. We have hope for parents with children that are diagnosed with DIPG, we've got a place for them to come and now our mission is to find a cure," says Capobianco.

Giving families like the Burons the hope they need to continue the fight against DIPG.

"It's got a zero percent cure rate and funding is next to nothing and it's absolutely, it's really, it's embarrassing and I'm glad that everyone is coming out, honoring our children. Hopefully they'll be some hope in sight and for the future," says Buron.

All the money raised at Milan's Miracle Run is used locally. Ken Buron isn't stopping here. For yet another year he will run in the chicago marathon in honor of his daughter, Emma. To donate to Milan's Miracle Run click here.