Update from the Chordoma Foundation - October 2016

Your questions about chordoma answered by experts

Unless you have a medical degree – and possibly even then – making sense of chordoma and how to deal with it can be a real challenge. Every day, we speak with patients, family members, and friends looking for answers to important questions, and over the years we’ve gotten a sense of what the most common questions are. Now, you can get straight answers to those questions directly from some of the world’s leading chordoma experts through our new “Expert Answers” video series.
We are excited to share the first five videos in that series today, with more to follow in the months ahead. Whether you are new to chordoma, or you or someone you care about has been dealing with it for a while, we hope that this series will provide greater clarity about this complex disease and help you make more informed decisions.
Watch the first 5 Expert Answers videos »


Expert Recommendations for the Diagnosis and Treatment of Chordoma booklet now available in four languages

Earlier this year, We created this resource based on published recommendations from more than 40 expert physicians to help patients and families make informed medical decisions and get the best care possible. As part of our continuous effort to better serve the global chordoma community, we are happy to announce that the booklet is now available in four languages – English, Italian, Spanish, and, most recently, Dutch. Many thanks to our volunteer, Chris te Stroet, from the Netherlands for his help with the Dutch translation.

Download booklet »

Should you have any questions as you read through this information, please don’t hesitate to contact our Patient Navigation team at


Michael Lim, MD

At Johns Hopkins, Dr. Michael Lim is known by his many impressive leadership roles as both a clinician and a researcher. At the Chordoma Foundation, we know him for his fierce dedication to improving the lives of chordoma patients, and for his tireless efforts to harness the body’s immune system to fight this disease. Since 2011, with support from the Foundation, Dr. Lim has demonstrated that chordoma tumors are coated with molecules called checkpoint proteins that shut down attack from the immune system, and that blocking these proteins with drugs called checkpoint inhibitors in mouse models has antitumor effects. Now Dr. Lim is working with colleagues at Memorial Sloan Kettering to launch a new clinical trial testing this same approach for chordoma patients.
Learn about Dr. Lim’s work to develop immunotherapies for chordoma »


Michelle and Danny K.

It was just over a year ago that Danny – a father, business owner, and avid traveler – received the life-shattering diagnosis of chordoma. He and his wife Michelle, both self-described Type A personalities, set out to learn everything they could in order to get Danny the best treatment possible. With the help of the Foundation, they put together a plan of attack that involved a transsphenoidal resection with Dr. Paul Gardner at the University of Pittsburgh Medical Center. The surgery proved successful, and with recovery under his belt and his 40th birthday upon him, Danny was ready to celebrate. What he didn’t know was that Michelle – inspired by Danny’s desire to improve the odds for everyone affected chordoma – had planned a surprise party that brought together friends, family members, and fire-breathing belly dancers to raise money for chordoma research.

Read Michelle and Danny’s story »


Recent Chordoma Community Conferences connect patients to chordoma experts in their community

More than 100 patients and family members joined us for two recent, regional Chordoma Community Conferences in the Netherlands and Midwestern United States. Both events provided an opportunity to learn about the latest treatment and research advances, connect with others in the community, and take action to advance the search for a cure. We’re grateful to Leiden University Medical Center and the Mayo Clinic for partnering with us to put on these events, and to all of the faculty at each institution who volunteered their time and expertise.

CCC at Leiden highlights (in Dutch) »

CCC at Leiden highlights (in English) » 

CCC at Mayo Clinic highlights »


8th Annual Rare Artist Contest underway

The EveryLife Foundation for Rare Diseases is accepting submissions now until December 5 for their 8th Annual Rare Artist Contest. Designed to celebrate the unique talents of the rare disease community, the contest also aims to raise awareness about the burden of rare diseases, which affect more than 30 million Americans. Members of the chordoma community have won in various categories of the contest for each of the past two years. We’re cheering for the artists in our community – Pio Pascual, Steve Carboni, and Sharon Berlan – who have entries this year!

Learn more, vote for your favorites, and submit your own entry »


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