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Update from the Chordoma Foundation - January 2016

Long-time Research Goal Achieved with 10th Valid Chordoma Cell Line

When the Foundation started, researchers didn’t have the basic materials needed to study chordoma (e.g. tumor tissue, cell lines, mouse models). As a result, research stagnated. To solve that problem, we set out to create those resources and make them available to the research community. Fast forward to today: We’re pleased to announce we have surpassed our longstanding goal of acquiring 10 valid chordoma cell lines. This eliminates a major barrier that has held back chordoma research and treatment development for years and opens the door to countless new research possibilities.
 
But, we’re not stopping here. Because each cell line is a model of one individual’s tumor, it is important to have a collection of cell lines that represent all of the various forms of chordoma. Therefore, we will continue working to expand and diversify our cell line collection to ensure that every patient subgroup is represented. 

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International Meeting of Experts Defines Best Practices for Treating Recurrent Chordoma

For the second time in two years, we worked with the National Cancer Institute of Italy and the European Society of Medical Oncology to convene a meeting of leading chordoma physicians with the goal of developing consensus about how best to care for chordoma patients. The first meeting produced evidence-based recommendations focused on the initial diagnosis and treatment of chordoma, which were published last year in The Lancet Oncology. In November, over 60 physicians from Europe, Japan, and the US gathered once again in Milan, Italy to share their experiences and develop recommendations for managing recurrences. Through a day of constructive discussion, the group reached agreement on many key principles, and made progress toward a second consensus statement, which will be completed later this year. 

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2015 brought significant progress in chordoma research, and valuable new services for the chordoma patient community. Catch up on last year’s notable accomplishments and get a preview of what’s ahead in our recent year-end update.

PATIENT RESOURCES

Presentations Available from Italian Community Conference

In November, more than 60 patients and family members came together in Milan, Italy for our first Italian Chordoma Community Conference. Held at the University of Milan, the conference was entirely bilingual, offering simultaneous translation between Italian and English. Visit the conference page to see pictures and download presentations ranging from Chordoma 101 to an update on recent research advances.

Chordoma Survivor Publishes Book on Her Experience

Author Susan L. Garbett has published her second book, Confronting Chordoma Cancer: An Uncommon Journey, a memoir of her experiences battling sacral chordoma. Susan says her goal in writing this book was “not only to bring awareness to this little known and very rare form of cancer but also to help empower people struggling with the uncomfortable realities and consequences of chordomas and other types of cancer.” Learn more about Susan’s story in this video

UPCOMING EVENTS

Third Annual Half Marathon Fundraiser

After two successful years in Miami and almost $100k raised for the Foundation, team captain Steve Mandel and a team of more than 20 runners are heading to New York to tackle the Airbnb Brooklyn Half Marathon on May 21, 2016.
 
Steve was diagnosed with sacral Chordoma in 2012 when it was incidentally spotted on an MRI after he survived a nearly fatal hit-and-run car accident. After the accident and a difficult recovery from surgery to remove his chordoma, Steve was told he may never walk properlylet alone runwithout some form of prosthesis. Today, Steve remains in remission and has successfully completed two half marathonsa true testament to the power of perseverance.
 
Registration for the Brooklyn Half is full, but you can support Steve and Team Chordoma Foundation by donating or volunteering at the marathon.

OPPORTUNITIES TO PARTICIPATE IN RESEARCH 

Clinical Trial Available for Patients Planning to Have Radiation

Researchers at the National Cancer Institute are recruiting patients planning to have radiation in the near future to participate in a clinical trial testing a new therapeutic vaccine in combination with radiation. The trial is designed to determine whether the vaccine, called GI-6301, given in combination with radiation is more effective than radiation alone at shrinking chordoma tumors. The vaccine is designed to stimulate the immune system to attack cells that produce a protein called brachyury, which is present at high levels in chordoma but not in normal tissue. Contact our Patient Navigator at support@chordoma.org to learn more.

Patients Can Advance Research Through Our Tumor Donation Program

Researchers need chordoma tissue to make discoveries that will lead to new treatments and, ultimately, a cure for chordoma; however, lack of chordoma tissue poses a major challenge to research. Patients can help overcome this challenge by donating tissue to the Chordoma Foundation Biobank, which facilitates the collection and distribution of chordoma tumor tissue. Contact our Manager of Research at biobank@chordoma.org to participate or learn more.

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