The Chordoma Community Day in San Diego was a resounding success, bringing together patients, survivors, and their loved ones for a day of learning, connection, and inspiration. The event began with heartfelt stories from Jeff McAdam, a chordoma patient, and Bill Primomo, a chordoma survivor. Their candid reflections on navigating a chordoma diagnosis set an uplifting tone for the day.
A highlight of the event was the Meet & Connect session, where participants broke into smaller groups based on tumor location. These discussions were facilitated by our dedicated Peer Guides — Sue Brenneman, Erik Clark, Paul Herrick, and Chris Jones. The conversations were so engaging that it was hard to pull everyone away for the next session!
Patricia Rubio, RD from UC San Diego shared valuable insights on the role of nutrition in cancer care, providing actionable advice for attendees. After a lively lunch break filled with conversation, the focus shifted to research updates. Dr. Santosh Kesari, Director of Neuro-Oncology at St. John’s Cancer Institute presented findings from his recently completed pilot study of pemetrexed in chordoma and announced the opening of his new chordoma clinical trial combining pemetrexed with pembrolizumab, which is now open for patient enrollment. Dr. Joseph Schwab, Director of Spine Oncology at Cedars Sinai discussed the importance of patient-reported outcomes (PROs) and requested that attendees complete the sacral chordoma PRO that he and colleagues have developed.
The final presentations of the day featured Chordoma Foundation staff. Dr. Dan Freed highlighted the progress of CF Labs and the pivotal role the Foundation plays in uniting researchers, clinicians, biotech firms, and pharmaceutical companies to accelerate breakthroughs. Dani Pike, a sacral chordoma survivor, shared her personal journey and her work at the Foundation, where she helps the community get involved in the mission to advance research and support patients.
A special thank you to our sponsor, Cedars-Sinai, for making this event possible. It was a truly memorable day of connection, learning, and hope for the future!
Recordings
In case you missed it, here are the recordings. Though they’re not top audio quality, we're sharing them because each speaker delivered unique and inspiring insights that offer hope in their own unique ways.
- Jeff MacAdam - chordoma patient
- Bill Primomo - chordoma survivor
- Patricia Rubio (Moores Cancer Center) - Healthy eating to optimize nutrition in survivorship
- Dr. Santosh Kesari (Providence Saint John's Cancer Institute) - Pemetrexed based combination treatments for chordoma
- Dr. Joseph Schwab (Cedars-Sinai Medical Center) - Patient-reported outcomes development in chordoma
- Dan Freed (Chordoma Foundation) - CF research updates
- Dani Pike (Chordoma Foundation) - Make an impact and go forward with hope
Thank you to our sponsor!
We're deeply grateful to our sponsors for their generous support of Chordoma Community Day San Diego, which brings together patients, families, and experts to share knowledge and foster a supportive community. Our sponsors make it possible to provide valuable resources and create meaningful connections for those affected by chordoma.
Questions?
Contact us at events@chordoma.org.