Chordoma Foundation

Uncommon Awards presented for remarkable contributions

Last week more than 200 people joined us in Boston for the International Chordoma Research Workshop and International Chordoma Community Conference. While we were all gathered together to learn, we took the opportunity to celebrate the progress that has been made in the field of chordoma and recognize those who have made truly remarkable contributions to advance the search for a cure and improve the lives of those affected by chordoma.

We celebrated during dinner on Friday night by presenting Uncommon Awards to people who exemplify uncommon qualities – perseverance, insight, collaboration, action, and inspiration – which are essential to success in the fight against chordoma.

We are proud to recognize the 2018 award winners for their service and dedication.

Uncommon Action | Chris Jones

The Uncommon Action Award is given to volunteers who go above and beyond in service to the global chordoma community. Recipients are active volunteers who selflessly give their time and skills to assist others.

This year’s Uncommon Action Award was presented to Chris Jones for his consistent teaching, guidance, and support of the chordoma community as a Peer Guide, a moderator of the Chordoma Survivors group on Facebook, and a CF Community Advisory Board member.

 

Chris Jones Uncommon AwardChris Jones with Andrew Schoelkopf, CF Board of Directors.

“Chordoma is very important to me because my family and our friends were all impacted (rocked to our cores) by the diagnosis of my daughter at age 18. Chordoma remains important because it’s still commonly misdiagnosed by non-chordoma experts who don’t know what they don’t know.

 This award is especially meaningful to me since I’ve aligned my goals with the Foundation’s … to help improve the lives of people impacted by chordoma and directly encouraging anyone who is newly diagnosed to first do their homework, get multiple expert opinions by teams that treat it routinely, and most importantly leverage the various services and extensive information available by the Foundation … while they lead the search for a cure.”

– Chris Jones

 

Uncommon Champion | Steve Mandel

The Uncommon Champion Award is given to individuals who make a significant impact by inspiring others to support the Foundation’s mission.

This year’s Uncommon Champion Award was presented to Steve Mandel for his #TeamChordoma half-marathon fundraising efforts in Miami and Brooklyn. Since 2014, these efforts have raised more than $250,000 for better treatments, better care, and a better experience for all affected by chordoma.

 

Steve MandelSteve Mandel running a half marathon for the Chordoma Foundation

“I am humbled by this award. Five years ago when we started our half marathon fundraiser, it was just me and four friends. Today, we have more than 60 runners on #TeamChordoma, all of which are survivors, relatives, friends, community, and staff members of the Chordoma Foundation. This event has become a staple at the Foundation and I hope it serves as a grassroots model for many others in the community to kick-start their own #TeamChordoma fundraiser.”

– Steve Mandel

 

Uncommon Collaboration | Ulm and Heidelberg Chordoma Research Teams

The Uncommon Collaboration Award is presented to a group of investigators who have worked together to make exceptionally important contributions to the understanding of chordoma and/or the development of new therapies.

This year, the Uncommon Collaboration Award was presented to the University of Ulm and Heidelberg University Chordoma Research Teams. Together, their teams have rapidly translated laboratory discoveries into a recently-launched clinical trial testing the targeted therapy palbociclib for chordoma patients. Their partnership exemplifies the type of collaboration between preclinical and clinical research teams needed to bring promising therapies to patients.

 

Uncommon Award - Ulm University
Kevin Mellert from Ulm University with Josh Sommer, CF Co-Founder and Executive Director.

“Ulm is extremely pleased and honored by the Chordoma Foundation’s award. Years ago and well before the Chordoma Foundation was founded, Josh and his mother, Simone, came to visit us here in Ulm. She made enormous efforts in getting us engaged in this topic and kind of urged us to raise more chordoma cell lines than the one we had published as U-CH1.”

– Peter Moeller, Ulm University Chordoma Research Team

 

“I am truly amazed by everything the Foundation does to improve our understanding and clinical management of chordoma. I have never seen such a collaborative spirit and willingness to share knowledge and resources. The Uncommon Award means a lot to our team as it recognizes cross-institutional, interdisciplinary teamwork between clinical investigators in Heidelberg and our friends and colleagues at Ulm University whose preclinical work prepared the ground for this trial.”

– Stefan Fröhling, Heidelberg University Chordoma Research Team

 

Uncommon Insight | Opher Gileadi, Oxford University

The Uncommon Insight Award is presented to a researcher who has made an exceptionally important discovery which deepens our understanding of chordoma and advances the development of new therapies.

This year, the Uncommon Insight Award was presented to Opher Gileadi for solving the crystal structure of brachyury, a vital step both toward understanding how brachyury drives chordoma and developing new therapies that target brachyury. Not only does it address one of the top research priorities identified by the field, but it will undoubtedly serve as a crucial jumping off point for future studies and additional insights.

Uncommon Award - Opher GileadiOpher Gildeadi with Josh Sommer, CF Co-Founder and Executive Director

“This award was an honour (and a very pleasant surprise). One of the strengths of the Chordoma Foundation is the sense of urgency in translating scientific discovery to fight the disease, and the ability to very quickly bring together scientists from different areas (and countries). Over the last year since we started working on brachyury, our contribution has been to solve the structure of the human brachyury protein at atomic resolution; we have done this for both the ‘normal’ gene and the G177D variant which has been linked to increased risk of chordoma. Normally, this discovery would take months to reach publication, and then maybe years to be exploited. With the help of Josh Sommer and David Drewry, we immediately formed a network of collaborating experts in chemistry, cell biology, crystallography, and disease biology, and we’re already moving forward to discover inhibitors of brachyury.”

– Opher Gileadi

 

Perseverance | Joel Beckman

The Perseverance Award is presented to individuals whose wholehearted and unwavering commitment of time, talent, and resources have made a truly profound impact on the Foundation’s success.

This year, the Perseverance Award was presented to Joel Beckman for his extraordinary contributions to the Foundation over the past decade as a leader on the Board of Directors, Chair of the Development Committee, mentor and guide to fellow patients, successful fundraiser, and transformational donor. Joel’s strategic thinking, tireless dedication, and generosity have been instrumental in growing the Foundation into the organization it is today.

 

Uncommon Award - Joel BeckmanJoel Beckman (center) with Heather Lee, past Perseverance Award winner, and Josh Sommer, CF C0-Founder and Executive Director.

“Nothing has ever meant as much to me as the Perseverance Award. Chordoma has been a major battle for me and I’m incredibly happy to be here nine years after being diagnosed with chordoma, during which time I have seen both of my sons married and my two grandchildren born. 

The Chordoma Foundation is saving lives and improving the lives of so many individuals confronting the disease. I’m truly amazed when I look at the progress the Foundation has helped to achieve in such a short time. And I’m so proud that I’m able to play a role in such an extraordinary organization.” 

– Joel Beckman