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Update from the Chordoma Foundation - February 2016

Embarking on a systematic search for better ways to treat chordoma

We're excited to announce a multi-year partnership with an extraordinarily talented team of scientists at the Broad Institute of MIT and Harvard to find new ways to target chordoma’s vulnerabilities. Led by renowned Harvard professor and founding member of the Broad Institute Dr. Stuart Schreiber (pictured), the Broad team will employ three powerful and complementary approaches to systematically uncover new therapeutic targets for chordoma.

This project is made possible by a generous $500,000 contribution from the family of a chordoma survivor. We are extraordinarily grateful for their support and optimistic that this investment in the Broad’s work will provide a fast path toward new treatment options for chordoma patients.
 
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COMMUNITY CONFERENCES

Two Chordoma Community Conferences planned for 2016 in Massachusetts and Minnesota 

Chordoma Community Conferences bring together members of the chordoma community to learn, connect, and take action. This year, we are pleased to announce we are hosting both an international and a regional community conference. Join us to hear from leading doctors and scientists about the latest advances in chordoma treatment and research, to connect with fellow members of the chordoma community, and to get involved in the search for a cure. Details and registration information will be announced soon.​

International Chordoma Community Conference
Friday, July 15 • Opening Reception and Dinner
Saturday, July 16 • Conference
Boston, Massachusetts
 
Mayo Clinic Chordoma Community Conference
Saturday, October 15
Mayo Clinic in Rochester, Minnesota

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CF NEWS

Biotechnology executive and accomplished attorney join our Board of Directors

Our Board of Directors is growing with the addition of two highly respected experts, seasoned biotechnology entrepreneur Christy Shaffer and award-winning employment attorney Kerry Shad. Kerry and Christy join the Board at an exciting moment as we begin to translate growing knowledge about chordoma into new therapies for chordoma patients and continue to enhance our services to the chordoma patient community.

Read more »

FEATURED CHAMPION

Steve Mandel: Survivor runs to raise funds for chordoma

Last month we announced that chordoma survivor Steve Mandel will run his third half marathon to benefit the Foundation—remarkable, after making an unlikely recovery from a near-fatal car accident and being diagnosed with sacral chordoma. Following a successful surgery to remove the tumor and a 40-day recovery in the hospital, Steve set out on an ambitious mission to return to his previous physical condition. He joined with his two best friends to begin training for a half marathon to raise funds for the Foundation. Steve has now successfully completed two half marathons that raised nearly $100,000 and will captain a growing team of supporters at the Brooklyn Half Marathon on May 21, 2016.
 
“I’ve been very fortunate,” Steve says. “I had my tumor removed and I am doing well. I’m in the best shape of my life. But a lot of people dealing with chordoma don’t have a fate like mine, so this event is about trying to make the lives of everyone affected by chordoma better.”

Read Steve's inspiring story »

HELPFUL RESOURCES

Special offer on PicnicHealth services available to chordoma patients

Looking for a way to keep track of complicated medical records? PicnicHealth is a service that some patients have found helpful. It collects and electronically stores patients’ medical records, lab results, doctors’ notes, and CT or MRI images in a secure online platform. Their team works with healthcare providers to obtain the medical records and then creates a comprehensive health timeline that can be easily shared with new physicians on the patient’s behalf. A special offer is available to chordoma patients and more information can be found on PicnicHealth’s website.

COMMUNITY FUNDRAISING EVENTS

NYC variety show to benefit CF

New York-based comedian Sachin Shaan (DISH Network) and dancer/choreographer Pavan Thimmaiah (NBC's Today Show) will host a variety show on February 27 to benefit the Foundation. If you’re in the NYC area and interested in attending, use discount/promo code CHORDOMA to get $5 off on tickets.

Third annual half marathon fundraiser

This month’s featured champion Steve Mandel and a team of more than 20 runners will tackle the Brooklyn Half Marathon on May 21, 2016, as part of the Third Annual Half Marathon Fundraiser to support CF. You can donate to help the team reach their $50,000 goal.

OPPORTUNITIES TO PARTICIPATE IN RESEARCH 

Clinical trial available for patients planning 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. Contact our Patient Navigator at support@chordoma.org to learn more.

Patients can advance research through our tumor donation program

Chordoma tumor tissue removed during surgery is vital for many types of research, but too often it is simply discarded.​ Through our Biobank, we can help patients ensure that their tissue is saved for research. If you are planning to have surgery and are interested in donating your excess tumor tissue, please contact our Manager of Research at biobank@chordoma.org to participate or learn more.

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