Update from the Chordoma Foundation - May 2016

Patient Navigation Service helps more than 400 families in first year

In April of 2015, we launched a Patient Navigation Service to help individuals facing chordoma find and access the care they need. Part of the Foundation's ongoing commitment to serve the chordoma community, it has since helped more than 400 families from 37 countries find experienced doctors, understand treatment options, connect with peers, and much more. Most importantly, we’ve been heartened to see the tangible impact it is having on the lives of patients like Monica Cruz-Diaz, whose outlook and clinical course changed dramatically after connecting with our patient navigator, Shannon Lozinsky.

Learn more about Monica’s story and how our Patient Navigation Service is helping patients get the care they need »


Join us at the International Chordoma Community Conference

Last call for early bird discount

The Chordoma Community Conference (CCC) is a unique opportunity to learn about the latest advances in chordoma treatment and research, to connect with fellow members of the chordoma community, and to take action to advance our shared goals. We hope you will join us for the CCC on Saturday, July 16, as well as a special dinner on Friday, July 15 with doctors and researchers attending our International Chordoma Research Workshop. Register for both events before June 1 for the early bird rate of $150 (a $25 savings). Check out a draft of the agenda and list of confirmed speakers for what will be an informative and inspiring pair of events.​

Review schedule and register today »


Family raises money and awareness after chordoma takes their young son

Before he passed away from chordoma in 2012 at the age of ten, Cameron Riccomini was nuts about sports. Looking for a way to honor Cameron’s memory, his older brother Connor decided to organize a fundraiser Cameron would’ve loved: a dodge ball tournament. Now an annual event, this year a record 236 middle-schoolers dodged balls and had a great time, with proceeds benefitting the Chordoma Foundation. Cameron’s parents Rich and Colleen also remain committed to honoring their son’s memory with an annual pub crawl in eastern Long Island.
“This disease really stinks; it is often not a rosy picture,” Colleen shares honestly. “We do truly believe that one day something close to a cure will be found, and that the Chordoma Foundation can help us get there, so we keep on raising money. We just really don’t want other families to have to go through what we have.”
We are grateful to the entire Riccomini family for their remarkable commitment to beating this disease and are honored to tell their story.

Read more »


Renowned neurosurgeon, Dr. Paul Gardner, joins Medical Advisory Board

We are thrilled to welcome Dr. Paul Gardner, director of the Center for Skull Base Surgery at the University of Pittsburgh Medical Center (UPMC) as the newest member of our Medical Advisory Board (MAB). In addition to having one of the most active skull base chordoma practices in the world, Dr. Gardner and his colleagues at UPMC are known for pioneering innovative surgical approaches to improve outcomes for patients with skull base tumors like chordoma. We are grateful to Dr. Gardner and to our entire twelve-member MAB for their invaluable service in guiding our clinical research strategy and the continued development of our patient services.​

Read more about Dr. Gardner »

WE’RE HIRING: Director of Development

Interested in a career that will accelerate chordoma research and help improve the lives of chordoma patients? We’re looking for a passionate and entrepreneurial Director of Development to lead the Chordoma Foundation’s fundraising program and to work with the chordoma community to achieve our shared vision for better treatments, better care, and a better experience for everyone affected by chordoma. If you are a fundraising professional who cares about chordoma, we want to hear from you. Please contact us or pass this position description along to others who may be interested​.

Read job description and apply today »


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. Contact our Patient Navigator at to learn more.​​

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 to participate or learn more.


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