Update from the Chordoma Foundation - March 2017

Now enrolling: Immunotherapy trial for chordoma patients

Doctors at Johns Hopkins Hospital are now enrolling chordoma patients with advanced or recurrent tumors in a Phase 1 clinical trial studying the safety and initial effectiveness of the immunotherapy drug nivolumab with and without stereotactic radiosurgery (SRS). The goal of these therapies is to harness the body’s own immune system to more effectively fight chordoma. The trial, designed specifically for chordoma patients, will also open for enrollment at Memorial Sloan Kettering Cancer Center in the coming months. The trial is being led by Dr. Michael Lim and Dr. Yoshiya (Josh) Yamada.
The Chordoma Foundation is proud to support this trial with a $300,000 research grant made possible by your generous contributions, which were matched dollar-for-dollar by an anonymous donor. It represents the culmination of more than five years of research conducted in Dr. Lim’s lab and supported by the Foundation. Thank you to everyone who helped bring this trial to fruition!

Learn more about nivolumab Phase 1 clinical trial  »
Find out if you could be eligible for this trial »

Contact a Patient Navigator »


CF receives 4-star rating from Charity Navigator

We are proud to announce that the Foundation has earned the highest possible rating – 4 stars – from America’s largest independent charity watchdog, Charity Navigator. Becoming a 4-star charity places the Foundation among the nation’s highest-performing nonprofits, on measures of fiscal management, accountability, and transparency. Most importantly, it is a reflection of our commitment to being good stewards of your contributions and to building a strong and sustainable organization that will have the staying power needed to see our mission through to completion. Thank you for entrusting us with your investments in a better future for those affected by chordoma – it is a responsibility we take on with great pride and seriousness.

Read more about our Charity Navigator 4-star rating »

$25,000 prize for new pediatric cell lines

With the help of an anonymous donor, we are now offering two $25,000 prizes to researchers who develop new cell lines derived from pediatric chordomas. This will supplement our ongoing $10,000 prize for all other chordoma cell lines – an incentive which has resulted in the development of more than a dozen new cell lines in the past 6 years, exceeding our initial goal of 10. Now, our priority is to expand our cell line collection to be fully representative of the entire patient population, so that all chordoma patients stand to benefit from advances in research.

Learn more about the pediatric cell line prize »

New Expert Answers videos

Three new videos have recently been added to our Expert Answers Video Series, featuring topics such as drug treatment for chordoma, the role and value of molecular profiling, and participating in clinical trials. The goal of this series, launched last fall, is to provide straightforward answers to your most frequently asked questions.
Watch the new videos » 


Save the dates: Upcoming Chordoma Community Conferences

Mark your calendars for our two upcoming Community Conferences. These events bring together patients and caregivers to learn about the latest research advances, connect with other affected individuals, and become as informed as possible about life before, during, and after treatment. 

We hope to see you there!

Chordoma Community Conference at MD Anderson Cancer Center – October 28, 2017 (Houston, TX)
iCalendar  •  Google Calendar  •  Outlook

2018 International Chordoma Community Conference – March 23–24, 2018 (Boston, MA)
iCalendar  •  Google Calendar  •  Outlook 

Learn more about these events »

4th Annual Chordoma Foundation Half Marathon Evening Fundraiser

More than 40 runners will be participating in the Brooklyn Half Marathon on May 20th as part of Team Chordoma. Since launching the annual fundraiser four years ago, Team Chordoma has raised more than $150,000 for chordoma research. Their goal this year: to raise $75,000. To celebrate their achievement, team captain Steven Mandel will be hosting a party that evening from 7PM–11PM at The Farm in Soho, NYC (447 Broadway, 2nd Floor). This all-inclusive event will offer food, drinks, music, and more. 

Reserve your tickets now »
Purchase an original Run for Chordoma performance shirt (ENDS MARCH 31) »


Peer power: Two Guides, dozens of life-changing relationships

Since 2011, our Peer Connect Program has united the chordoma community and fostered life-changing relationships between individuals affected by chordoma. Norma Jones has been involved with the program since its inception, and Susan Garbett has been a dedicated Peer Guide for more than a year and a half. Through their experience, knowledge, and generosity of time and spirit, Peer Guides like Norma and Susan serve as a guiding light, illuminating the road ahead and offering a shoulder to lean on along the way. We recently had the opportunity to speak with Norma and Susan about their experiences and learn what the program has meant to them and those they’ve connected with.
Read Norma and Susan's Featured Champion profile »


Copyright © 2017 Chordoma Foundation, All rights reserved.

unsubscribe from this list    update subscription preferences