WASHINGTON – Josh and Tracey Blackmore never expected to arrive on Capitol Hill with a message for lawmakers. But there they were Tuesday, weaving in and out of congressional offices, clutching a photo of their young son, Brooks.
“It’s for Brooks and all of our children’s future,” Tracey said. “Brooks is making us brave right now.”
As Brooks’ parents tell it, the 6-year-old Carmel boy “gained his angel wings” on May 21, 2016, dying after a nearly yearlong battle with cancer. In June 2015 Brooks was diagnosed with two stage-four brain tumors, which doctors said were inoperable.
Parents like Josh and Tracey spent the past two days in Washington urging the passage of The Childhood Cancer Survivorship, Treatment, Access and Research Act, known as The STAR Act.
Billed as the most comprehensive childhood cancer bills ever taken up by Congress, it would expand funding for childhood cancer research, better track childhood cancer rates and work to improve the quality of life for survivors.
“They said tell your story,” Tracey said. “Tell about Brooks, everything we have been through with him, and they listen. They really are touched by our stories. And it puts a face to the statistic.”
The U.S. Senate has already passed the measure and the U.S. House is expected to do the same.
Josh and Tracey met with Senators Joe Donnelly and Todd Young along with Congresswoman Susan Brooks, all from Indiana, and all who back the bill.
Advocates say personal stories, like that of the Blackmores, is what can push this legislation toward the finish line.
“Research is where we find cures,” Eric Richards said, president and CEO of the Cancer Support Community. “Without research and researching funding, we have no cures. It’s plain and simple.”
The Coalition Against Childhood Cancer reports just four percent of federal funding for cancer research goes to childhood cancer.
Families like the Blackmores say it’s time for more.
“With more funding becomes more research and clinical trials,” Tracey said. “And hopefully one day there will be a cure for Brooks’ type of brain tumor and several of the others that don’t have cures right now.”