Wamego woman’s cancer advocacy recognized by White House
TOPEKA, Kan. (WIBW) - A Wamego woman’s work fighting against an aggressive form of brain cancer is having her work recognized by the White House.
Lisa Ward lost her son, Jace, to diffuse intrinsic pontine glioma (DIPG) in 2021 after a 25-month battle.
“Our son Jace was 20 living a great 20-year-old life going to Kansas State University, getting ready to go to law school working in a law firm,” she says. “And, you know, he just had a little bit of a twit and the side of his eye and he was like, you know, I kind of think I have double vision.”
Jace was taken for what they thought would be minor medical care.
“It didn’t prepare me for what we heard,” says Ward. “And that was you have an inoperable, aggressive terminal brain cancer. It’s in your brainstem. It’s going to steal your talk, your walk, your swallow, it’s going to steal your eyesight and possibly your hearing. Your heart will slow and eventually it’ll take your last breath.”
Now, she’s carrying on his legacy of advancing research and treatment methods for the disease with a project called DIPG Onelink.
When Jace was diagnosed, little research had been done to find new diagnosis and treatment methods since the 1960′s.
Looking for resources, the Ward’s turned to Facebook. There, they found a community of DIPG families but little in terms of next steps for fighting the disease.
“Along the way, what we learned is, people were getting answers from Facebook,” says Ward. “From strangers we’d never met sharing our MRIs, sharing all of our clinical data on Facebook and Jace would say ‘I can’t even use Facebook as a source to write a research paper’ and we’re deciding what I should do for life saving treatment.”
They realized the negative impacts this lack of data has on patients and got to work ensuring DIPG research doesn’t go another 60 years without progress.
“So he called a zoom call from his hospital bed,” she says. “And he’s asked 15 of the best doctors who we had met while he spoke at the NIH and it Congress, ‘who sends you patients?’ Because you’re the best of the best. So however you get your patients that’s what we need to tell people to do.”
Jace has since passed but his mother continues pushing forward with the DIPG Onelink project, a data and information hub for patients and their families.
“We’re launching a system together, all of us together,” says Ward. “That will just be that parent and parent hand holding from that first day of inoperable aggressive to the day that you say goodbye. And we we just want people to know their options, how to get to them and if they need financial support, there’s a network of foundations just like ours that help them take those steps.”
On September 13 the Biden Administration announced new initiatives for Cancer Moonshoot, a 2016 project aimed at preventing and reducing cancer deaths. Of those new initiatives is DIPG Onelink.
Ward is headed to the White House next week to continue her advocacy for DIPG research and treatment.
Copyright 2023 WIBW. All rights reserved.