Passion and Progress: The Enduring Legacy of Rodolfo Roye

Photo: Rodolfo Roye with Dr. Norbert Liebsch

Rodolfo Roye was a builder. Educated as an engineer and skilled as a businessman, he faced every challenge with the mindset that the right solution could be constructed if you're willing to focus on the details. Whether he was creating exquisitely crafted buildings or pursuing new treatments for his chordoma, his approach was the same — take the lead, give your whole heart and mind to the process, and collaborate with the best possible partner. This is the example he set for his sons, Jonathan and Alex, and the way they live their lives.

When he was first diagnosed with chordoma more than 25 years ago, little was known about the disease. Rodolfo and his family traveled back and forth from Venezuela to the United States — uprooting their lives, sometimes for months at a time — in search of the best and latest treatments. Sometimes, those treatments worked; other times they didn’t. And more than once throughout his six recurrences, doctors told Rodolfo he was out of options.

But rather than accept this, Rodolfo and his sons decided to approach his chordoma the same way they approached their businesses — by taking the lead and collaborating with the right partner to move mountains. Over two decades, surgeries, and multiple treatments and clinical trials, Rodolfo beat the odds again and again, often with the help of science he himself funded.

We at the Foundation first met the Roye family in 2014. From the very beginning, the Royes treated us as a respected business partner. Donations were investments, goals had measurable milestones, and ideas were shared and discussed enthusiastically and collaboratively. From funding high-impact research at leading institutions such as the Broad Institute of Harvard and MIT, Johns Hopkins University, Memorial Sloan Kettering Cancer Center, and John Wayne Cancer Institute to enabling the launch of four new clinical trials, Rodolfo helped to dramatically shorten the timeline to better treatments and inspired others to donate through generous matching gifts.

The Roye’s focus always rested squarely on expanding the science and unlocking new options for Rodolfo, guided by planning, structure, and a healthy dose of faith.

Lasting Impact

It is not an overstatement to say that chordoma science and treatment would not be where it is today without Rodolfo. The substantial contributions from the Royes over the years dramatically accelerated the Foundation’s research roadmap, helped to recruit high caliber partners to join in our cause, and sparked advances that countless patients directly benefit from. Some of these advances include:

• Developing some of the first patient-derived xenograft (PDX) models for chordoma — These human tumor tissues grown in specialized mice are critical tools for testing the potential of new therapies.

• Scaling up the Foundation’s Drug Screening Program — Which has enabled the evaluation of more than 80 drugs, resulting in data that provided the rationale for several clinical trials.

• Enabling the launch of several chordoma clinical trials — Including testing the cancer drugs afatinib, nivolumab, and pemetrexed.

• Uncovering chordoma's vulnerabilities through our target discovery partnership with the Schreiber Lab at the Broad Institute — Resulting in convincing evidence that brachyury is the main Achilles’ heel of chordoma, and revealing numerous additional potential ways to attack the disease.

By viewing his health challenges as puzzles yet to be solved rather than foregone conclusions, Rodolfo infused his optimism, infectious energy and hunger for life into the Chordoma Foundation team. He rallied doctors and scientists to come together and create new paths for himself and other patients, and he motivated all of us to think like builders and never give up.

A Force of Nature

Rodolfo’s true legacy is how he lived his life, with his whole heart. He had many ups and downs in his 69 years — as an immigrant, a businessman, and a patient — but those challenges only strengthened him and never defined him. He was always looking forward.

We will remember Rodolfo as resilient and joyful, with a wonderful laugh, a passion for problem-solving, a focus on excellence, and meticulous attention to detail. We will also remember him as a loving husband and father to his wife of 45 years, Lourdes, his sons Jonathan and Alex, and his grandchildren. Every time he spoke of them, his eyes lit up, and every feature softened, revealing the depths of his affection.

As we continue our collective quest to solve chordoma, Rodolfo’s legacy of leadership, generosity, and forward-thinking will remain a powerful inspiration.