Chordoma Foundation

Expanding our impact in 2016: A note from the Board

By Andrew Schoelkopf, Chair, Chordoma Foundation Board of Directors

On behalf of the Chordoma Foundation Board of Directors, I wanted to take this moment to share with you the extraordinary excitement we feel about the Foundation’s progress and momentum.

2015 was perhaps the most meaningful year in the Foundation’s history, bringing with it a number of important milestones – from launching the first Patient Navigation Service for chordoma, to reaching our longstanding goal of ten valid chordoma cell lines, to moving a wave of new treatments toward clinical trials.

It also presented us with some sad and poignant moments as we said goodbye to those we loved and lost in the chordoma community including our fellow Board member, Hans Keulen, who, in October, passed away due to complications of his chordoma. Hans was an invaluable part of the progress we have experienced in recent years, and he will long be remembered as one of the most passionate and talented patient advocates in our midst. We are all grateful to have served with Hans, and will continue to honor his vision by remaining steadfastly committed to serving the worldwide chordoma community.

As we head into the second quarter of 2016, the Foundation finds itself at an exciting stage of development, with an ambitious agenda focused on improving the lives of those affected by chordoma and leading the search for a cure. Backed by a growing number of funders, and a full slate of research partners, we are poised to catalyze even more progress in the year ahead.

Here are four key ways we aim to increase our impact:



Growing our team & resources

In the past six months, we have grown from five full-time staff members to seven, bolstering our marketing, communications, and outreach capabilities, and allowing us to bring our message and services to a broader audience. We also added esteemed and talented new members to our Board of Directors and Medical Advisory Board. Now, we are forming a Community Advisory Board to gain more frequent input from patients and family members as we expand our patient services and prepare to launch new clinical trials.



Bringing promising treatments to the clinic

Our investments in research are helping to reveal a number of treatment approaches that hold promise for chordoma. We are determined to bring those treatments to patients by supporting a series of well-justified clinical trials. Our plan this year is to help initiate three new clinical trials – two requiring funding from the Foundation and one that will be fully funded by a pharmaceutical company. As you heard from Josh last month, we are thrilled to have recently raised the $300,000 needed to fund one trial in 2016, and we are now working to raise an additional $300,000 needed for the second trial. This summer we have scheduled a joint meeting of our Medical and Scientific Advisory Boards to identify the next slate of promising trials to support. This is a turning point for the entire community.



Expanding the pipeline of new treatments

With new clinical trials on the horizon, we are redoubling our investments in research to identify and rigorously vet potential treatments in the laboratory. This will give us a robust pipeline of new treatments to take into the clinic, and ensure that there will continually be new trial options available for chordoma patients. To that end, we are currently supporting research at Memorial Sloan Kettering and the Broad Institute of Harvard and MIT to systematically identify new therapeutic targets. We are also making significant investments in a Drug Screening Pipeline that will enable researchers and companies to quickly and efficiently test promising drugs in chordoma cell lines and mouse models (look out for an announcement about this exciting new program in the next month). And, later this year, funding permitting, we plan to make new investments in research to discover drugs that will target brachyury, which is a key driver of chordoma.



Helping more patients get appropriate care

Last year, a multidisciplinary group of specialists co-convened by the Chordoma Foundation published the first-ever evidence-based recommendations for the diagnosis and treatment of chordoma in the Lancet Oncology, paving the way for more consistent, coordinated care worldwide. This year, we are working to generate a second set of recommendations focused on patients with recurrent and advanced disease. We are also developing a series of educational materials intended to help patients and their caregivers understand and act upon these expert recommendations. At the same time, we are improving and expanding our Doctor Directory to help more patients find doctors with experience treating chordoma – we have already added nearly 20 new doctors this year. Finally, all of us on the Board are heartened by the increasing number of patients who are benefitting from our Patient Navigation Service. In the first year of the program we helped 310 patients overcome barriers to getting care, and based on the first quarter of this year, we project that we will serve more than 400 patients this year.


Thank you very much for your ongoing support of these efforts. We are very proud to have the opportunity to work with and on behalf of a strong and vibrant chordoma community, and we look forward to continuing to forge ahead together.

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