Update from the Chordoma Foundation - February 2017

Celebrating 10 years of uncommon progress

This month marks 10 years since a small group of chordoma survivors and family members joined together to form the Chordoma Foundation in hopes of helping to bring about a better future for everyone affected by this disease. Thanks to the faith, support, and generosity of many who share that hope, what started as a small group of volunteers has grown into the leading funder of chordoma research, an efficient catalyst for chordoma drug development, and a dependable source of information and support for thousands of patients and their loved ones across the world.
In that time, we’ve experienced the highs of fast-paced research progress, and also the lows of losing friends and loved ones to this pernicious disease. But because of what we’ve accomplished together over the past decade, we are filled with even greater hope for the future as we have reached a point where patients will begin benefitting from research advances in a matter of years rather than decades.

Thank you for helping to make this progress possible!
To celebrate our 10-year anniversary and the sense of hope we feel at this moment, throughout 2017 we’ll be sharing a series of stories about the headway you’ve helped us make against chordoma in the last decade, and the opportunities that lie ahead. To kick things off, please check out (and share!) our “Then and Now” timeline, featuring 10 ways the Foundation has improved the lives of those affected by chordoma, and paved the path to cures.

See the top 10 accomplishments of the last 10 years »
NOW HIRINGWe are looking for a Director of Research to manage our growing research portfolio and advance new drug development efforts. If you are interested or know someone who might be, we'd love to hear from you! Check out the position description here.


Using zebrafish to model chordoma

Christian Mosimann and Alexa Burger are a husband and wife team making headway modeling chordoma in zebrafish. Taking what has been learned about chordoma biology over the past decade, they are working to induce chordomas in zebrafish that have the same molecular features as human chordomas. While mouse models are currently the gold standard for preclinical drug testing, zebrafish could eventually offer a faster and lower-cost alternative that would further accelerate the pace of chordoma drug development. With promising initial success, they are now looking to build a network of collaborators to begin putting their models to the test.

Read Christian and Alexa's Featured Researcher profile »


Clinical trials currently open to chordoma patients

Patients with inoperable, recurrent, or metastatic chordoma may have more options to benefit from experimental therapies than they imagined. To learn about these options, check out our clinical trials list, which includes information on chordoma-specific trials as well as 10 other trials that our Medical Advisory Board has identified as relevant to chordoma patients.

Read more about clinical trials open to chordoma patients »


Riccomini family rallies Long Island teens in support of chordoma research

On February 16, the Riccomini family continued their annual tradition of organizing a sports-themed fundraiser in loving memory of Cameron Riccomini, who passed away in 2012 after a five-year battle with chordoma. This year’s fundraiser was a teachers vs. students basketball game at Sayville Middle School, the school Cameron would have attended. Thank you to everyone who attended — we are humbled to see the Sayville community continue to support our work to cure chordoma.

University of Michigan becomes newest tumor donation partner

We’re pleased to announce that the University of Michigan Health System (UMHS) has recently become the newest institutional partner of our Tumor Donation Program, joining the University of Pittsburgh’s Medical Center (UPMC) and Memorial Sloan Kettering Cancer Center (MSKCC) in gathering chordoma tissue samples to fuel drug discovery. Through this partnership, chordoma patients undergoing surgery at UMHS facilities will be introduced to chordoma-relevant research initiatives, and offered the opportunity to donate a sample of their tumor for research. For those who wish to participate, tumor tissue removed during their surgery will be sent to the Foundation’s Biobank and used for the development of new chordoma xenograft models. Learn more about how you can donate tumor by contacting (877) 230-0164 or


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