SHAWNEE, Kan. — Cancer is a disease that touches everyone at some point in their lives—including kids and their families. A Kansas-based nonprofit, Tough2gether, is working to make a terribly hard time in people’s lives just a little bit easier.
“Tough2gether is funding research, giving grants to families. So it's financial support, emotional support. It's pointing you in the right direction,” said Jay Rice, one of the nonprofit’s board members. “You just got told your whole life is turned upside down, and your priorities are changing, your head’s spinning, and we say, okay, we've been here before.”
Tough2gether was founded in memory of Jace Ward.
He passed away from DIPG, a rare and aggressive form of pediatric brain cancer. Most children diagnosed with DIPG die within a year. There's a drug that’s been accepted by the FDA that Rice hopes will change that.
“With FDA approval, then ONC201 can be accessible to kids,” said Rice. “When the doctor says, go home and make memories, that's wrong. Now you can go home and make memories and be a kid.”
The group is advocating for the drug. Jace Ward’s mom, Lisa, believes it could dramatically improve the lives of children with DIPG.
"When he found out that only he was granted permission and there were other kids that were denied he wasn’t pleased,” said Lisa Ward. “He made us promise that we would create an expanded access program so other kids could get the drug as well.”
This weekend, Tough2gether is hosting its annual fundraiser—what started as a simple softball tournament has grown into a full family fun day. The event takes place Saturday from 8 a.m. to 8 p.m. at Mid America Baseball Fields in Shawnee. There will be a cornhole tournament, basketball, face painting, and a wide range of activities for families. All proceeds support the nonprofit’s mission and raise awareness for childhood cancer.
“May will always be such a bittersweet month for us. It is brain cancer awareness month and every year we see more and more people supporting us and brain cancer. That just means so much to someone who’s in the fight or has lost someone they love,” said Ward.
KSHB 41 reporter Olivia Acree covers portions of Johnson County, Kansas. Share your story idea with Olivia.
