The Chordoma Community Day in San Francisco Bay Area was a wonderful event bringing together patients, survivors, loved ones, and experts for a day of learning, connection, and inspiration.
The day opened with a warm welcome from Shannon Lozinsky of the Chordoma Foundation. Chordoma survivor Ann Kletz, then shared her inspiring lived experience, highlighting resilience and the importance of an athlete’s mindset.
Medical sessions began with Dr. Atman Desai of Stanford Medicine discussing surgical approaches for spinal chordomas, followed by Dr. Susan Hiniker who presented advanced radiation therapy techniques in chordoma management. Dr. Matei Banu provided insights into treatment strategies for skull base chordomas and the current research taking place. This was followed by all three experts engaging attendees in an informative Q&A panel moderated by our own Executive Director, Josh Sommer.
The Meet & Connect session allowed attendees to build personal connections and share experiences, emphasizing the power of community support. This was one of the many highlights of the day.
After lunch, Dr. Lisa Ruppert of Memorial Sloan Kettering Cancer Center virtually shared valuable perspectives on rehabilitation's critical role in comprehensive chordoma care. Dr. Susan Seav addressed strategies for managing pituitary hormone deficiencies associated with skull base chordoma.
Shannon Lozinsky then introduced key elements and helpful resources in chordoma survivorship, followed by Dr. Nina Singh's insightful session, "Let's thank our meerkats," focusing on mindset and leaning on the community.
The day concluded with important research updates from the Chordoma Foundation shared by Josh Sommer and a powerful closing by Dani Pike, encouraging everyone to make an impact and carry forward hope.
Thank you to all participants for making this event memorable and impactful!
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.
Chordoma Community Day San Francisco Bay Area (full playlist)
Recordings feature:
- Ann Kletz, chordoma survivor, shares her powerful lived experience and patient perspective.
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Dr. Atman Desai, neurosurgeon, provides an overview and insights into chordoma spine surgery.
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Dr. Susan Hiniker, radiation oncologist, presents advanced radiation therapy techniques in the management of chordoma.
Dr. Matei Banu, chordoma clinician-scientist, shares the current research efforts taking place at Stanford Medicine.
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Dr. Lisa Ruppert, rehabilitation medicine specialist, discusses management strategies for sacral chordoma side effects.
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Dr. Susan Seav, neuro-endocrinologist, explains management strategies for pituitary hormone deficiencies in skull base chordoma.
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Josh Sommer, chordoma survivor and Executive Director, shares the latest research updates from the Chordoma Foundation.
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Shannon Lozinsky, Director of Patient Services, provides an overview of resources to address side effects and improve quality of life.
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Dani Pike, chordoma survivor and CF Development and Engagement Officer, shares her story and how to make an impact and go forward with hope.