The Chordoma Community Day in Jersey City 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 Josh Sommer, Executive Director of the Chordoma Foundation.
The morning sessions opened with “Resilience in Action: Learning from Survivors and Caregivers,” featuring Sharon Berlan, Steven Mandel, Lauren Mulholland, and Megan Stewart, moderated by Sara Nick from the Chordoma Foundation. Their stories offered a powerful testament to courage, perseverance, and community and kicked off a memorable day.
Next, Dr. Chandra Sen (NYU Langone) shared insights into state-of-the-art skull base chordoma treatment and current results, followed by Dr. Daniel Sciubba (Northwell Health), who discussed innovations in the treatment of spinal and sacral chordomas. Dr. Michelle Alonso-Basanta (Penn Medicine) then highlighted updated radiation options for chordoma. This concluded with an engaging Q&A panel with the audience.
Before lunch, Dani Pike, chordoma survivor and CF Development and Engagement Officer, inspired attendees with a session on ways to get involved, leading into a Meet & Connect session where attendees shared experiences and built connections over lunch with our Peer Guides as moderators.
Following lunch, Josh Sommer and Dr. Dan Freed provided a comprehensive view into research updates, showcasing progress in understanding and treating chordoma and addressing questions in an informal AMA.
The day’s final sessions included Andrea Locke, CF Patient Navigator, introducing chordoma survivorship resources, Dr. Lisa Ruppert (Memorial Sloan Kettering Cancer Center) discussing the importance of rehabilitation in chordoma care, and Kenny Brighton, CF Head of Philanthropy, closing with gratitude and highlighting the power of the community.
The event concluded with a spirit of thanks and motivation reinforcing the strength of the chordoma community and our shared commitment to advancing care, research, and hope.
Thank you to all who joined us in Jersey City for an inspiring day of connection and progress!
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 Jersey City (full playlist)
Recordings feature:
- Survivor and co-survivor experiences: Sharon Berlan, Steven Mandel, Lauren Mulholland, and Megan Stewart will share their experiences with chordoma and hopes for our community going forward
- Dr. Chandra Sen, neurosurgeon at NYU Langone Health, will share an overview of and insights into skull base surgery.
- Dr. Daniel Sciubba, neurosurgeon at Northwell Health, will provide an overview of and insights into chordoma spine surgery.
- Dr. Michelle Alonso-Basanta, radiation oncologist at Penn Medicine, will give a talk sharing the latest advances and future directions in chordoma radiotherapy.
- Dani Pike, chordoma survivor and CF Development and Engagement Officer, shares her story and how to make an impact and go forward with hope.
- Andrea Locke, Patient Navigator, provides an overview of resources to address side effects and improve quality of life.
- Dr. Lisa Ruppert, rehabilitation medicine specialist at MSKCC, will discuss management strategies for chordoma side effects.