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Jace and Lisa

Lisa (a blonde, white woman) stands smiling and leaning into son, Jace (a blonde, white, young adult man).

Lisa is working to fulfill her son, Jace’s, vision of improving diffuse intrinsic pontine glioma (DIPG) research.

Credit: National Cancer Institute

Co-Founders, Tough2gether Against DIPG/DMG

Jace (he/him) wanted to be a lawyer. His mother, Lisa (she/her), recalls his strategic mind, leadership, and compassion. When diagnosed with diffuse intrinsic pontine glioma (DIPG), these qualities drove him to tell the stories of people with DIPG and push for research innovation. Jace knew harnessing data could lead to progress and when consenting to donating his brain, he noted: “Dear scientists, I’m giving you my greatest asset. Please use it and share what you learn from it. If you don’t, I’ll haunt you.”

In 2021, at age 22, Jace passed away, and Lisa got to work fulfilling what they started together. So far, that’s led to piloting a DIPG data project, creating a board of DIPG experts to advise providers and families, and more. “If he could fight for 25 months, what would happen if we committed 25 months to see how far our organization could go?”, Lisa said. “We’re at month 14 and we’ve had a great start. We shared Jace’s vision at the White House Cancer Moonshot Childhood Cancer Forum this year and believe good things are coming for childhood cancer.”

Jace was also featured in a 2019 NCI Cancer Currents Blog post.

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