Our recent International Chordoma Research Workshop and Community Conference included the Uncommon Awards ceremony, a special tradition recognizing members of our community who’ve made remarkable contributions to our mission.
We were thrilled to recognize this year’s awardees:
Uncommon Champion awards, honoring fundraisers:
Maggie and Jon Bates, whose Swing Fore the Cure event brings together family and friends in Kansas City each year in support of chordoma research and care,
Steven Golick, whose fundraisers over the years have totaled more than $600,000, enabling several important research projects in Canada,
And Mick and Noreen Potempa, who’ve held their annual One in a Million gala and email campaign for the past decade, raising an incredible $356,000 and counting.
Uncommon Action awards, recognizing volunteers:
And Caroline Kooy, for her longtime dedication to chordoma patients and doctors in the Netherlands, and whose efforts helped form the blueprint for our international Ambassador program.
Uncommon Spark award, recognizing a young person who’s already making a lasting impact:
Kaitlin Slepian, for launching and leading our virtual support group for adolescents and young adults affected by chordoma, and rallying them around a Giving Tuesday fundraiser last year.
Uncommon Insight award, in appreciation of researchers who further our understanding of chordoma and how to treat it:
Stuart Schreiber, PhD, and Tanaz Sharifnia, PhD of the Broad Institute of MIT and Harvard, whose cutting edge research, scientific rigor, and perseverance have shed new light on chordoma biology, systematically identified a number of promising new therapeutic targets for chordoma, and inspired further focus on chordoma in labs across the world.
Uncommon Collaboration award, which recognizes physicians and scientists who unite their colleagues to improve chordoma treatments:
Drs. Silvia Stacchiotti and Alex Gronchi of Italy’s Istituto Nazionale dei Tumori, on behalf of the entire team of investigators collaborating on the SACRO clinical trial — an ongoing study across Europe and Japan that seeks to answer whether surgery or radiotherapy offers better outcomes for newly diagnosed patients with sacral chordoma). In addition to spearheading the SACRO study Silvia and Alex’s leadership was the driving force behind the Chordoma Global Consensus Group whose work resulted in the first consensus guidelines for the treatment of chordoma, as well as research that led to the discovery of afatinib as a potential treatment for chordoma.
Finally, our Uncommon Care award was presented to Dr. Norbert Liebsch for the extraordinary care he provided to his chordoma patients during his more than 30-year career as a radiation oncologist at Massachusetts General Hospital. In that time, he was among the pioneers in the use of protons to treat chordoma, and cared for more than 1,000 chordoma patients from across the world — perhaps more than any other single physician anywhere. He brought remarkable dedication, thoroughness, and empathy to the care of his patients, for which he is widely revered.
We’re deeply grateful to this year’s awardees and to so many more who contribute unique gifts to our mission.
To learn how to get involved with us, click here.
Maggie Bates with son, Patrick
Kenny Brighton with Noreen and Mick Potempa
Kimberley de Haseth and Irene Badura
Sue Brenneman and Josh Sommer
Kaitlin Slepian with parents Mark and Laurie
Josh Sommer and Stuart Schreiber
Alex Gronchi and Silvia Stacchiotti
Uncommon Champion, Action, and Spark awardees
Ways to help
We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.