Chordoma Community Day in Chicago: A Day of Inspiration, Learning, and Connection
Our second Chordoma Community Day of the year, this time in Chicago, was a heartwarming and inspiring event for patients and their loved ones. The day began with powerful stories from our lived experience speakers, Frankie Cordero and Toni Neff, who each shared their unique journeys with chordoma. Their experiences, while challenging, highlighted the incredible strength and hope that can come from such adversity.
Following these inspiring presentations, we moved into our Midwest session, led by the dedicated Noreen Potempa. This session provided a valuable opportunity for attendees to learn more about each other and explore ways to get involved with the Chordoma Foundation. The sense of community and common purpose was apparent as attendees bonded over their shared goals and experiences.
The quality of life portion of the day was led by Andrea Locke, Patient Navigator at the Chordoma Foundation, who provided an overview of the resources available through the Foundation. Dr. Sam Shahpar then discussed the importance of physical medicine and rehabilitation in maintaining function for those affected by chordoma. His insights underscored the critical role of comprehensive care in improving patient outcomes.
A highlight of the day was the art therapy workshop hosted by Jacqueline Carmody from Twist Out Cancer. This engaging and inspiring session demonstrated the healing power of art and fostered deep connections among participants as they shared the personal stories behind their artwork.
In the afternoon, research presentations highlighted the latest advances in chordoma treatment. The Northwestern Medicine chordoma experts, Drs. Jean-Paul Wolinsky, Victor Arrieta, and Vinai Gondi shared their ongoing efforts to ensure the best possible outcomes for patients. Our very own Josh Sommer gave an inspiring presentation on CF Labs and our chordoma research efforts, detailing the remarkable journey of the Chordoma Foundation and the progress that has been made.
The day concluded with chordoma survivor and Chordoma Foundation staff member, Dani Pike's session on how to get involved with the Chordoma Foundation. Her insights on involvement and support provided attendees with practical steps to help advance better treatments for chordoma and stay connected with the chordoma community.
Overall, our Chicago Chordoma Community Day was a testament to the strength and resilience of our community. It was a day filled with learning, inspiration, and meaningful connections, all of which are critical as we continue our journey toward better treatments and support for everyone affected by chordoma.
We would like to thank our sponsor, Northwestern Medicine Proton Center, for supporting this event.
Recordings
In case you missed it, here are the recordings. Each speaker delivered insights and information that offer hope in their own unique ways that we hope will inspire you. The show the speakers only (no slides) so we’ve includedlinks to the powerpoint presentations where available.
Frankie Cordero - chordoma survivor
Toni Neff - chordoma patient
Dr. Sam Shahpar - Shirley Ryan AbilityLab - Physiatry and rehabilitation: Keeping function first (Powerpoint presentation)
Josh Sommer - Chordoma Foundation - The story of CF Labs (Powerpoint presentation)
Dr. Vinai Gondi - Northwestern Proton Center - Sharpening the edge: Radiotherapy advances for chordoma
Dr. Jean-Paul Wolinksy and Dr. Victor Arrieta - Northwestern - Chordoma: What we are doing now and where changes can be made (Powerpoint presentation - Arrieta)
Dani Pike - Chordoma Foundation - Make an impact and go forward with hope
Questions?
Contact us at events@chordoma.org.