Jace Ward had just turned 20.  He loved his work preparing for trials in a law firm, taking business classes and making college friends when he had a bit of double vision in the far corner of his eye.  An optometrist, a CT and an MRI two days later would confirm what no one expected. Jace had DIPG – 100% fatal upon diagnosis, the most deadly childhood cancer had begun to ravage his body.  The kind doctor looked Jace in the eyes. “What you have is inoperable, its aggressive, it is cancer in your brainstem. It will kill you.  It’s not a matter of if, it is more a matter of when.”  With that Jace asked simply, “How long do I have?”  The doctor hesitated, Jace continued, “I’m not afraid to die, I’m afraid I won’t make an impact before I do”. The answer hung heavy in the air “You have 6-9 months.”  What do you do with 6-9 months?  How do you spend the time you have? How at age 20 do you even comprehend such a diagnosis?

For Jace it was clear, you first comfort your friends with a flipped “I can’t die, I’m busy!” then you set out to change the course for yourself and anyone who comes after.  Jace hit the road to find the best care, and when his biopsy showed clearly the tumor mutations, Jace asked his doctor at a wonderful center of excellence, “Ok – so which trial should I do?”  The answer was “where would you like to spend time in the country? We can look at clinical trials.gov for something in that area.”  

Jace wasn’t looking for a travel agent, he wanted answers and could not believe it would be parents on facebook that could tell him the most about DIPG trials.  For Jace, his purpose was set, whenever he found gaps in knowledge, in treatment, in trial access, in data use, in family financial support, he worked to fill them.  When Jace had an opportunity to have access to medication children did not have or have several leading doctors weigh in on his case, he always turned to his mom and said – write this down – “every 25 year old mom with a 4 year old needs the same chance as me.  Neither of them have found their voices yet.”  

Jace spent his 25 month journey with DIPG speaking for the little children, the adults and everyone in between battling DIPG and DMG who did not feel seen.  He made sure from the NIH and Congress to Twitter to his college to titans in industry, everyone knew #DIPG Won’t Wait.  He informed doctors in the CarTCell trial he entered as patient #2 everything he felt and experienced so that the side effects could be managed and children today are seeing great turn around in symptoms albeit not yet a cure.  

“What would I do to fight DIPG, I would make the circle bigger – I would urgently share ideas and data, I would make sure those who could help looked DIPG in the face of the children who deserve so much more.”  Jace’s courageous fight ended July 3, 2021.  In his last effort to change the course of DIPG, he asked his parents to donate his brain.  He had instructed the consent form to read “I’m giving you my greatest asset, use it, share it, share everything you learn from it. If you don’t, I’ll haunt you”.  That consent form hangs in the lab that shares Jace’s greatest asset with the world.  

“I can’t die, I’m busy” became more than a comfort to Jace’s friends.  It became his battle cry.  Like many with DIPG Jace lost clear vision, hearing in one ear, the use of his right side, the ability to speak clearly, then at all, eventually DIPG stopped his heart.  Jace never lost his fight.  His mind was clear to his very last hours and burned with the desire to change DIPG forever.  We are proud to continue his fight and that of thousands of other lives taken far too soon.  The lights of these children and young adults lead our way.  We, the members of DDRFA, know personally the sacrifices made to DIPG DMG far too well. #DIPG Won’t Wait and precious lives are depending on us to stay busy.