This past week, the International Chordoma Research Workshop (ICRW) and Chordoma Community Conference (CCC) brought together more than 200 individuals – doctors, researchers, patients, and caregivers – from 11 countries and 21 states to forge connections, share the latest progress in research and treatment, and work together to advance our collective mission to improve the lives of those affected by chordoma.
From new disease models to new therapeutic targets to new clinical trials, we heard update after update about encouraging advances in chordoma research and treatment development.
Thanks to the tireless dedication of chordoma researchers, and the donors, volunteers and champions within the chordoma patient community who make their work possible, the pace of progress towards better treatment is reaching an exhilarating tempo. Last week, as we gathered in Boston, the Chordoma Foundation recognized several of those individuals who have made truly remarkable contributions to propel the field forward with our Fourth Annual Uncommon Awards. This year’s award recipients included:
Uncommon Collaboration Award
Adrienne Flanagan, Susanne Scheipl, and Fabrice Turlais of the University College London
David Drewry and Bill Zuercher of UNC Chapel Hill and the Structural Genomics Consortium
Two scientists living thousands of miles apart were unknowingly working on opposite ends of the same problem when they met our our last ICRW in 2013. Adrienne Flanagan, a pathologist and professor at University College London (UCL), had spent close to a decade trying to identify possible vulnerabilities and new treatment targets in chordoma. David Drewry, then a scientist with GlaxoSmithKline (GSK) in the U.S. and now head of the University of North Carolina’s Structural Genomics Consortium site, was building a program through which GSK could share its shelved compounds freely with academicians and investigators around the world.
Following their initial meeting, David and Bill Zuercher, a fellow GSK scientist and open access advocate, sent a library of over 1,000 compounds to Adrienne and her colleague Susanne Scheipl, an Austrian orthopedic surgeon and PhD candidate at UCL, to test against their panel of chordoma cell lines. With the help of colleagues including Fabrice Turlais, they found that chordoma cells were consistently sensitive to compounds that inhibited epidermal growth factor receptors (EGFR), indicating that EGFRs could be a potential treatment target for chordoma. The group published their findings in the Journal of Pathology earlier this month and, thanks to their discovery, a new Research studies involving human subjects that are done to test whether a treatment is safe, and how well it will work to treat a specific disease. testing a second-generation EGFR inhibitor in chordoma patients is preparing to launch later this year.
Uncommon Action Award
We consistently hear from doctors how unusually informed and engaged their chordoma patients are. That certainly describes Adriane Rothstein, a The surface of a portion of bone at the base of the skull. It is surrounded by the brainstem and both carotid arteries. Chordomas that form in this area are called clival chordomas. chordoma survivor who lives in Pasadena, California. Adriane has not only dedicated herself to learning as much as she can about the disease, she also generously shares her time and knowledge with other members of the community.
A passionate volunteer since the Foundation’s inception, Adriane’s list of contributions is long and varied – from serving on the organizing committee for multiple community conferences to acting as a peer guide, to providing invaluable advice and guidance on the creation of our patient services strategy. Over the past year in particular, her assistance in populating the updated Doctor Directory and helping to shape what is now the patient navigation service have been invaluable. Without asking anything in return, Adriane continues to show up again and again for the members of this community, doing anything she can to support the Foundation and advocate for those living with chordoma.
Uncommon Champion Award
When Beth Cullinan was diagnosed with chordoma, the outpouring of goodwill and support from her friends and family was tremendous. Following her recovery from surgery and proton beam radiation in 2010, Beth made a decision to harness the love of those around her to contribute to the search for a cure. She began hosting parties as a way to educate others about chordoma and raise the funds needed to advance research and care. Powered by her passion for life and desire to give back, Beth has rallied hundreds in her network to help create a better future for chordoma patients and their families, singlehandedly raising over $56,000 for the Foundation.
Recently, Beth also participated in the annual Cycle for Survival fundraiser, bringing in over $12,000 to support chordoma research at Memorial Sloan Kettering. Her commitment to the chordoma community and willingness to always go the extra mile to rally people behind this cause is truly uncommon. Beth is an inspirational force, making her one of the Foundation’s most successful champions.
Uncommon Commitment Award
Without Heather Lee, the Chordoma Foundation would not be what it is today. From serving as a founding member of the CF Board to launching our Peer Support Program to spearheading every single community conference we’ve ever held, Heather has left an indelible mark on the Foundation and the chordoma community. And despite losing her son Justin to chordoma in 2008, her dedication to our cause has never faltered. His legacy of perseverance is at the heart of everything she does, and has become the mantra of the Foundation.
With a background in nonprofit management, in the Foundation’s early days, Heather was instrumental in establishing best practices in governance, finance, and human resources, setting the organization us up for long-term strength and success. From 2010 through 2014, she served as chair of the Foundation’s Board, presiding over a period in which the budget tripled. During that time, Heather was a consistent voice for the needs of chordoma patients and caregivers, eventually helping to orchestrate the formalization and expansion of the Foundation’s Patient Services beginning in 2014.
Most recently, after rolling off the Board in 2015, Heather helped to launch and lead our new Community Advisory Board, giving the patient community a more formal voice in everything the Foundation does. If there were a Mount Rushmore for the Foundation, Heather would certainly be on it.