Chordoma Foundation


Chordoma Foundation Presents First Annual Uncommon Awards

Whether a patient, family member, volunteer, donor, physician, or researcher, our connection to chordoma makes us uncommon in what we make of that connection to chordoma; uncommon, as in exceptional, special, or remarkable. At this year’s Community Conference we presented the Foundation’s first annual Uncommon Awards recognizing the contributions of a few supporters.

Uncommon Collaboration

Dr. Garry Gallia, Johns Hopkins University & Dr. Menghang Xia, NIH Chemical Genomics Center

After meeting at the 2011 Research Workshop, Dr. Gallia and Dr. Xia collaborated to test promising FDA-approved drugs identified by Dr. Xia’s group in a mouse model developed by Dr. Gallia’s lab. With funding from the Chordoma Foundation they have quickly identified a class of drugs that appears to show promise in treating chordoma.

Uncommon Insight

Dr. Andreas Fritz, Emory University 

A developmental biologist studying spine development in zebrafish, Dr. Fritz was not even aware of chordoma until a botched experiment resulted in strange deformities in his fish. Rather than trashing the deformed fish, Dr. Fritz investigated further and found that the fish had what appeared to be tumors of the notochord. Further investigation revealed that these tumors share many of the same characteristics as human chordomas, potentially representing the first zebrafish model of chordoma, which could be enormously valuable for drug screening.

Uncommon Action

Sharon Berlan – Survivor 

Well-known to many in the chordoma community, Sharon provides invaluable support and guidance to countless chordoma patients through the Chordoma Support Group and Chordoma Survivors Facebook Group. Sharon has also been an active volunteer and a tireless champion for the Chordoma Foundation since its earliest days.

Uncommon Action

Hans Keulen – Survivor, CF European Liaison 

With a vision to expand the Chordoma Foundation into Europe, Hans has organized the European chordoma patient community and serves as a resource to numerous patients. Additionally, he has mobilized dozens of chordoma researchers in Europe and represents the Foundation in a variety of European research initiatives.


Uncommon Champion

Jeff Schilling – Survivor 

After being diagnosed at the age of 25, it took Jeff years to gain the strength to tell a room of people that he has cancer; but determined to do anything in his power to help find a cure, Jeff has since organized five successful bowling fundraisers, raising over $70K for the Foundation.

The Perseverance Award

Bruce, Lynette, and John Nelson (not pictured)

After John was diagnosed with chordoma in 2004, he and his parents, Bruce and Lynette, started raising money to fund chordoma research. The Nelson Family contributed the money they raised to the Chordoma Foundation soon after it was incorporated, providing the initial funding to get the Foundation off the ground. Since then, Bruce, Lynette and John have been unwavering in their commitment to the Foundation; with Lynette and John serving as volunteers and Bruce serving as a board member and treasurer from 2008 to 2012.