Jace’s Legacy
Jace was 20 when he was diagnosed with DIPG. He was the youngest of three siblings and the glue that held their relationships in place. He was quick witted and kind hearted. Jace was in his sophomore year of college majoring in business finance & entrepreneurship. Jace planned to attend law school and loved working at a law firm in Manhattan, KS. Jace loved a good time, a good football game and a good debate. He had friends from every walk of life and constantly brought people together. In fact on his 21st birthday, one day after his life expectancy, much to his parents surprise, over 500 college friends came to celebrate at their home. Jace lived every day with the mantra “I can’t die, I’m busy.”
After diagnosis, Jace also loved – truly loved – the children he met with DIPG. He never asked why me? He asked why the little ones – the kids who haven’t played football under the lights, or skipped school, or kissed a girl. He asked his doctor, on the day he was diagnosed, “how long do I have to make an impact before I die?”
Jace found purpose in speaking to the NIH about patient ownership of genomic data, and to Congress about the need to prioritize pediatric brain cancer funding. He knew the need families had to find better information about biopsies and treatment. “I wouldn’t even write my term paper using facebook as a resource, and here we are getting advice to save my life from it.” He knew he had received great benefit and peace of mind from the advice he received from a number of the best DIPG specialists. It was only right to make sure the other kids could have the same treatment. True to his nature, he convened a zoom call from his hospital bed at Stanford while undergoing Car T Cell treatment with the best doctors and Childrens Brain Tumor Network. Jace conceptualized what is now the My Dipg Navigator, the DIPG – DMG National Brain Tumor Board, a 50 foundation strong funding alliance, the annual Tough2gether Against DIPG breakfast in DC each fall for families and doctors, and the DIPG Travel to Trial Support Network. He caused the reoopening of the ONC201 expanded access treatment and expansion of the Stanford Car T Cell trial by influencing $1.7M in funding to those programs.
In his final months, Jace shared his desire to make one last gift to the DIPG community. He asked his mother to sign the consents as needed on his behalf to donate his “greatest asset”, his brain tissue. He directed his mother to write “I’m giving you my greatest asset, please use it, share it, share what you learn from it, and if you don’t… I WILL haunt you.” Just one more bit of Jace humor and an intentional nudge to work like lives depend on it, because they do. In Jace’s honor his family established Tough2gether Against DIPG where they continue to support the DIPG community, research and sharing of data.
Our Donation Story
Through Jace’s donation to Monje Lab, the researchers have learned much about what was hindering the Car T Cell therapy from reaching its highest purpose. As patient #2 on Car-T-Cell, the contribution of brain tissue was critical. As his family we are honored that Jace continues to provide new advances to beat DIPG. Lisa, his mother visited the lab in November 2020 and was met with so much respect, affection and understanding of who Jace was as shared through the stories of this doctors to the researchers. We were honored to learn that one young man decided to delay medical school in order to continue the work he began on Jace’s tissue and another came to the lab after hearing Jace’s story. While we wish Jace could be on Earth with us, it was important to Jace and has been comforting to us to know his life may bring answers to help the little children he so desperately hoped to save.
I can’t die. I’m busy!
Jace Ward
