Jace Ward: "I can't die, I'm busy."
Dale Carnegie once said, “Inaction breeds fear and doubt. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.” Facing a fight for his life, Kansas State University student Jace Ward did just that – he summoned courage and wisdom beyond his years to get busy, and he stayed busy for as long as his body allowed it.
He had just finished his sophomore year at the University of Kansas and was a transfer student at K-State’s College of Business studying Entrepreneurship when his doctor delivered the life-altering news that Jace had diffuse intrinsic pontine glioma (DIPG) – an aggressive and terminal cancerous brain tumor. DIPG almost exclusively affects children between the ages of 4-11. Jace was given nine months to live, so Jace got busy.
With no options for surgery, the 20-year-old immediately began thinking of ways he could make a difference, to make things better for the 200-400 children in the United States who are diagnosed with DIPG each year. He and his mother quickly began exploring treatment options and found a great lack of awareness and funding not just for DIPG, but also for other pediatric cancers. They battled for approval for Jace’s participation in a trial for ONC201, a new drug that would block dopamine from feeding the tumor’s growth. Their persistence paid off, and Jace was finally approved for ONC201. His condition improved and he went to work.
“I knew from our first meeting that Jace was going to be one of my super star students,” said Kevin Moodie, Jace’s academic advisor at K-State. “He came to our meeting extremely prepared and with an above average understanding of how his transfer was going to work. He was full of life, considering law school, and just excited to be here.”
While studying at K-State, Jace became an advocate for DIPG awareness in our nation’s capital, visiting house and senate offices on Capitol Hill, and his mantra became, “I can’t die, I’m busy.” He spoke at the 2019 National Institute of Health Symposium on Genomic Data, advocating for patients to have control of their genomic data in order to seek treatments. In February 2020, just before his 21st birthday, he delivered the closing speech at the inaugural DIPG Advocacy Briefing to Congress. Jace also worked on the passage of the Gabriella Miller Kids First Data Initiative 2.0 legislation, which called for childhood cancer research to be funded by pharmaceutical fines.
The ONC201 trial had given Jace relief from the symptoms of his cancer, but it had not taken the cancer away. The tumor was growing and making it difficult for Jace to walk and eat, and he was losing his hearing. In September 2020, he participated in a second clinical trial, this time in California. He was the second patient for the novel Car T-cell trial, knowing it was probably too late for his own cure or great improvement. It was a high-risk procedure, but his goal was to help the children with DIPG who came after him. During this treatment, Jace participated in a video panel discussion along with Steve Jobs’ son, Reed. Following the discussion, Jace was immediately offered a part-time job with Reed’s company, Emerson Collective, as a member of the health team. The Car T-cell trial did provide relief from his symptoms, and he became even more motivated to continue advocating.
On July 1, 2021, Jace was admitted to St. Louis Children’s Hospital in St. Louis, Missouri with a tumor bleed. On July 3, 25 months after his doctor gave him just nine months to live, his body could no longer stay busy, and his courageous fight saw an end. Remarkably, his efforts have inspired $5 million in funding for pediatric brain cancer research and treatment. Jace’s family continues to raise awareness and funds in his memory, and on September 25 during 2021 CureFest, the first Tough2Gether Against DIPG/DMG Breakfast fundraiser was held in Washington, D.C. During this event, Jace’s parents were presented with his Kansas State University diploma, a Bachelor of Science in Business Administration, with an emphasis in organizational management. It was awarded by distinguished alumnus Candace Duncan, a 1975 graduate of K-State and member of the K-State Accounting Hall of Fame.
“Jace comes to mind when talking with students struggling with health issues,” said Kevin. “I think back to how he handled his situation, and I try to keep students positive and motivated to finish. I try to help them see that they can have the same goals, just that getting there might look a little different now. On a personal level, I reflect on Jace’s attitude. If I’m having a difficult day, I force myself to take some deep breaths, and put myself in Jace’s thought process. Even though he was going through terrible things, he made his internal attitude match his external attitude, and he was able to stay positive.”