For years, University of Illinois Professor Guy Weinberg has known the power of Telluride Science workshop collaboration. A clinical anesthesiologist by trade, Weinberg hosted a few successful workshops on the molecular mechanisms of general anesthesia in the 1990s. But when his son was diagnosed with epithelioid hemangioendothelioma (EHE), a rare form of cancer that afflicts one in a million people worldwide, his interests began to shift. As Weinberg began researching the disease, he was disappointed to find there was little research on EHE. While he tried to do all that he could to advance the field, he had little success.

“I published a little bit on the disease. I tried to raise money for research on the disease. But none of these things were particularly effective,” Weinberg recounted.

After a recommendation from Telluride Science veteran Peter Salamon, Weinberg decided to get to the bottom of the disease the best way he knew how: a Telluride Science workshop.

“I wasn’t particularly productive doing research on EHE, but I could leverage the Telluride Science Research Center to bring those scientists who are really knowledgeable and capable in this field,” Weinberg explained.

Weinberg started by enlisting scientists working on the cellular mechanisms behind the cancer. EHE is caused by a translocation, or random chromosomal rearrangement, that causes two genes to fuse together. The fusion creates a cancer promoting protein. One of the genes that is fused encodes a protein called TAZ that many scientists, including Albany Medical College researcher John Lamar, study.

Lamar had specifically been researching TAZ’s associated signaling pathway, the Hippo Pathway, and its role in the spread of cancer. When Weinberg got word of Lamar’s work, he immediately recruited him to help organize the workshop.

“We started contacting some of the biggest names in the Hippo YAP-TAZ field, luring them to Telluride with the promise of amazing hiking and good conversation,” Lamar said.

This is the classical model of Telluride Science, and it worked. In 2017, Weinberg and Lamar, alongside Salamon, held their first workshop, “YAP/TAZ and TEAD: At the Crossroads of Cancer.” With the exception of last year’s workshop, which was made a webinar due to COVID-19, the group has met every year since.

“Every year we've had people from Asia, Europe, the UK, Canada and the U.S., and from many different areas of study, all cell biology, but looking at the problem from different angles,” Weinberg explained.

To Weinberg, the workshop meetings have been very important for the field of EHE research.

“The Telluride Science Research Center has been spectacularly successful not only for me personally, but in terms of advancing our knowledge of EHE,” Weinberg said. Two labs have now developed animal models for EHE. They're different models, but they are both very, very robust and interesting.”

Lamar echoed this sentiment, noting that the research wouldn’t have been possible without the workshop collaboration.

“The discussions in Telluride have really shed a lot of light on this disease,” Lamar explained. “There's no way my lab would have started working on this disease if it wasn't for going to the workshop. EHE research has really been fast-tracked because we have all these other people that are thinking about it, even if they're just giving us ideas at the workshop.”

Not only has the workshop collaboration ignited conversation on the disease, but it has also inspired potential follow-up projects. Workshop discussions inspired Lamar to test a possible way to treat the disease.

“The mutated protein encoded by the translocation causes more than 90 percent of EHE cases,” Lamar explained. “My theory was that there should be processes in the cell that can regulate this protein. If we can figure out how to regulate this protein, there's a good chance we can slow this disease because cancers that are driven by these translocations tend to be very addicted to the translocation.”

Lamar was able to secure funding from EHE Foundations in the USA, UK and Australia for this project. While the project is still in progress, Lamar remarked that there have been many exciting developments and hopes that the work will make a big difference.

He also explained how this work has dragged him into the EHE field, something he really enjoys and wouldn’t have happened without meeting Weinberg and Dr. Brian Rubin, a leading EHE researcher who has made many of the seminal discoveries about the disease.

“I really like being in this field because the EHE community is super engaged and the patients are very active,” Lamar said. “There are Facebook groups and they have meetings where they ask lots of questions. It really feels like you're a part of the community.”

Adding to the growing body of literature on EHE is especially important for the patients’ peace of mind. After many years of very few research developments, it is exciting that more information is becoming available to the public.

“When people get diagnosed with EHE, it often lingers for long periods of time,” Lamar said. “There's this hopeless feeling that people have that there's no one working on it. There's never going to be any solutions, and nobody understands much about the disease. So patients are excited to learn when new research is happening on EHE.”

This is the seventh in a series of scientist profiles highlighting how Telluride Science scientists have used their particular expertise to address the COVID-19 pandemic or found new ways to collaborate and continue scientific research to address global challenges.

To learn more about Telluride Science, visit telluridescience.org. For more on Lamar, visit sites.google.com/site/jlamarlab. For more on Weinberg, visit https://chicago.medicine.uic.edu/directory/name/guy-weinberg.