OUR STORY

The Story of Jace Ward

Jace Ward was a young man with a fierce spirit. At just 20 years old, he was building a life: working at a law firm, studying business, making friends, dreaming about his future. But in May 2019, something unexpected happened: he noticed a change in his peripheral vision. What seemed like a small symptom soon became a life-changing diagnosis — DIPG, Diffuse Intrinsic Pontine Glioma, a devastating and terminal brainstem cancer.

When the doctors told him, “You have 6-9 months,” his response was both heartbreaking and powerful: “I’m not afraid to die; I’m afraid I won’t make an impact before I do.”

That became not just his mindset, but his mission.

A Man on a Mission

Rather than retreat, Jace pushed forward. He didn’t just fight for himself — he fought for every child, every family, every person who would come after him facing DIPG or similar brain cancers. On the Tough2gether “Meet Jace” page, his mantra is clear: “I can’t die, I’m busy.”

He traveled, advocated, learned, and connected. He researched clinical trials and asked hard questions: when he had a biopsy, he didn’t just accept pain and prognosis — he pressed: “Which trial should I do next?”

He realized that many families don’t have the infrastructure, the support, or the resources to navigate complex cancer trials. So he turned his energy toward building something bigger than himself — a system to help others.

Building Something Bigger: Legacy Through Action

Jace channeled his vision into concrete, systemic change:

He helped launch a patient navigation continuum, bridging gaps in access to care for DIPG/DMG (diffuse midline glioma) patients.

He co-founded the Tough2gether Foundation (along with his parents), to support research, clinical trials, and most importantly, other families fighting.

He insisted on sharing data: in his final wishes, he asked that his brain tissue be donated — “If you don’t [share what you learn from it], I’ll haunt you.”

He advocated at the national level — from Congress to the NIH, he raised his voice. He wanted lawmakers, scientists, and clinicians to see DIPG, to feel urgency, to make the circle bigger. 

Even as his own body weakened, he continued: through CAR T-cell therapy trials, he saw improvements, shared everything he experienced with doctors, and helped future patients benefit. 

Legacy & Impact

Jace passed away on July 3, 2021, but his mission did not end. 

Through his vision, My DIPG Navigator was created — a resource to help families access treatment, understand trials, and navigate complex systems. 

The Tough2gether Foundation continues to raise funds, support research, and provide emotional and financial help to families.

Each year, people gather in his memory (for example, the “Live Free” event on June 29) to celebrate his life, his spirit, and his fight. 

His family, especially his mother Lisa Ward, continues to advocate fiercely — making sure that Jace’s dream of a future “when a child hears they have DIPG, it won’t mean a death sentence” continues to drive progress. 

In His Own Words

One of Jace’s most defining moments was when he asked his doctor how long he had to live — not out of fear, but out of purpose. He recognized that time was a gift, and he refused to waste even a minute. The way he lived those months showed courage, clarity, and a deep commitment to others.