Update from the Chordoma Foundation - August 2016

Videos from the 2016 International Chordoma Community Conference now available 

Closing remarks
Watch longterm chordoma survivor Bill Dorland recount his personal journey at the 2016 International Chordoma Community Conference.

As part of our ongoing quest to arm chordoma patients with the information they need to effectively navigate life with chordoma, we are excited to share videos and presentations from our recent International Chordoma Community Conference, which are now available to be viewed and downloaded on our website. Whether you were unable to join us in Boston or are simply interested in revisiting the content you heard onsite, you’ll find a wealth of useful information on the latest advancements in chordoma research and care delivered by the foremost experts in the field. Here are just a few highlights:

We encourage you to watch and share these videos, and appreciate your help in spreading the word to anyone else who may benefit from their content. If you have any questions, or need additional information, feel free to contact us anytime at
Thank you again to everyone whose participation and passion made our recent Research Workshop and Community Conference so impactful. We are charged up by the momentum that has emerged from these gatherings and look forward to sharing more exciting outcomes in the months ahead. 


Patient Navigation Service featured in FasterCures spotlight

Last month, FasterCures, a think tank that works to speed and improve the medical research system, profiled our Patient Navigation Service (PNS) in their monthly innovator spotlight series. The Q&A with Executive Director Josh Sommer was shared with over 2,000 readers from hundreds of medical research foundations. It explained how the PNS serves patients and families in need of support, and offered tips and insights for other organizations seeking to build successful navigation tools. This is the second time CF has been profiled in the innovator spotlight series, which aims to help foundations that fund research share best practices and ideas.
Read the Q&A »

 CF helps to inspire efforts to cure another rare disease

Since the Chordoma Foundation was started, we have always sought to learn from and apply approaches that have worked for other diseases, and we have welcomed opportunities to share ideas, learnings, and knowhow with our peers at other rare disease organizations. One of those organizations is Castleman Disease Collaborative Network (CDCN), founded by a young doctor, Dr. David Fajgenbaum, to tackle the rare disease that nearly killed him during medical school. Dr. Fajgenbaum connected with Josh Sommer in 2012 when he was starting the CDCN and the two have become thought partners and friends over the years. “Every rare disease needs a quarterback – someone to marshal the team, harness the resources, and lay out a game plan,” Josh advised when they first met, drawing on his own experiences forming CF. Fajgenbaum, who played football in college, took the advice to heart, and has since grown CDCN into a powerful force for progress in Castleman Disease research, uniting a network of hundreds of doctors and scientists across the world. Now, Dr. Fajgenbaum’s remarkable story of fighting to cure his own disease is being told in Science Magazine. We are thrilled to see the rapid progress he is making and proud to have been able to play a part in inspiring his impressive efforts.

Read the full article »


Chordoma Community Conference in The Netherlands in September

The first Dutch-Belgian Chordoma Community Conference will take place at Leiden University Medical Center (LUMC) on Saturday, September 17 and is open to patients, family members, and doctors located in the Netherlands and Flanders. The event will be conducted in Dutch. For more information, email

Register for the CCC at LUMC »

Chordoma Community Conference at Mayo Clinic in October

On Saturday, October 15, CF and the Mayo Clinic in Rochester, Minnesota, will jointly host a regional Chordoma Community Conference for patients, family members, and loved ones located in the Midwest. Medical experts from the Mayo Clinic will provide updates on state-of-the-art treatment and care options, personalized medicine, survivorship, advocacy, and more.
Register for the CCC at Mayo Clinic »
Please contact us at (919) 809-6779 or with questions about upcoming events.


Couple embarks on mission to champion research for others

Michael and Noreen Potempa had never even heard of chordoma when Michael was diagnosed with a skull base tumor in 2013, shortly after the couple’s 40th wedding anniversary. The diagnosis sent the Potempas and their three adult children into a high-gear “quest for knowledge,” ultimately leading them to the Chordoma Foundation. Through the Foundation, they connected with Dr. Gary Gallia, a skull base surgeon at Johns Hopkins Hospital, and Dr. Norbert Liebsch, a radiation oncologist at Massachusetts General Hospital, who were able to successfully treat Michael’s chordoma. Today, Michael is tumor free and the Potempas, who feel they have been given a gift, have become dedicated to raising awareness and money for chordoma research in hopes of improving the odds for others.  
On September 27, the couple will host their second “One in a Million” fundraising event near Chicago, featuring Dr. Gallia. All proceeds will go to the Foundation to support clinical trials to test promising new therapies.

If you would like to attend or contribute to the Potempas’ fundraiser, please visit their Eventbrite page
Read the Potempas’ story »


Clinical trial available for patients with dedifferentiated chordoma

Patients with dedifferentiated chordoma – a rare and aggressive subtype – may have a new treatment option: a recently opened clinical trial of an experimental cancer drug called tazemetostat. This trial is specifically for cancer patients whose tumors are deficient in a protein called INI1, which protects cells from becoming cancerous. Dedifferentiated chordoma is one of several types of cancer included in this trial because of the recent discovery that INI1 loss is common in this subtype of chordoma. For more information about this trial, contact our Patient Navigator or read the trial description at


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