The Chordoma Foundation periodically hosts free live webinars featuring researchers, clinicians, specialists, and patients to help you learn about various aspects of chordoma, living well after a chordoma diagnosis, and our work to accelerate the search for cures. You can watch these recordings of past webinars, and sign up for our newsletter to be notified of upcoming opportunities to join us live.
2021 Impact Update
Our Impact Update webinar shares remarkable recent progress toward better treatments for chordoma patients and improved experiences for everyone affected by this disease. In the webinar, you’ll hear our Executive Director Josh Sommer describe advancements across all of our priority areas, and highlight the many thrilling opportunities now in front of us. Key takeaways included:
- Comprehensive support for patients and survivors is now available, with more to come.
- More personalized patient care is on the horizon.
- An increasing number of promising clinical trials are becoming available to chordoma patients, and there’s a growing pipeline of new therapeutic concepts under evaluation for future trials.
- New immunotherapies and brachyury drugs may be only three or four years away.
- Everyone in this community can meaningfully influence the timeline at which better treatments become available.
Coping with anxiety, depression, and grief
Virtual Chordoma Community Conference Series, November 2021
Feelings like anxiety, depression, fear, and grief are commonly experienced both by people who have cancer and by their caregivers. Responses to our Chordoma Survivorship Survey indicate that more than half of chordoma patients and survivors and nearly 80 percent of caregivers and co-survivors experience at least one emotional health challenge during their journey with chordoma. During this webinar, we discussed ways to cope with anxiety, depression, grief, and other emotional challenges.
The webinar featured presentations by Jennifer Bires, MSW, LCSW, OSW-C, Executive Director of Life with Cancer and Patient Experience at Inova Schar Cancer Institute, and Megan Whetstone, LCSW, an oncology social worker with the Kelsey-Seybold Cancer Center. Their presentations addressed:
- Common mental health challenges experienced by cancer survivors and co-survivors
- Ways to manage and cope with these challenges
- What type of support is available to you
- How to get help for yourself or your loved one
Improving balance, strength, and mobility after treatment
Virtual Chordoma Community Conference Series, October 2021
Balance impairment and loss of mobility can be a challenge for chordoma patients before and after treatment. Responses to our Chordoma Survivorship Survey indicate that one-third of chordoma patients and survivors experience balance impairment and 20 percent experience loss of mobility in their extremities. Watch this 60-minute webinar, to learn about improving balance, strength, and mobility after chordoma treatment.
The webinar features presentations by Lisa Ruppert, MD, a cancer rehabilitation expert at Memorial Sloan Kettering Cancer Center, and Justin Brown, MD, a reconstructive neurosurgeon who directs the Paralysis Center at Massachusetts General Hospital. Their presentations address:
- What causes balance, strength, and mobility issues in chordoma patients
- How to talk with your doctors about your symptoms
- Ways to manage and improve these issues
- What types of doctors and specialists provide care for these challenges
- How to find doctors and specialists in your area who can treat you
Ask the Experts
Virtual Chordoma Community Conference Series, July 2021
Watch this 90-minute webinar featuring a panel of chordoma experts who answered questions from patients and caregivers about chordoma and chordoma treatment. This webinar is an adaptation of one of the most popular sessions at our annual Chordoma Community Conference.
- Ed Les, MD, clival chordoma survivor, CF Board member, Chair of CF Patient Services Committee
- Dr. Ziya Gokaslan, Spine Neurosurgeon, Brown Medical School and Lifespan Hospitals
- Dr. Vinai Gondi, Radiation Oncologist, Northwestern Medicine Chicago Proton Center
- Dr. Mrinal Gounder, Medical Oncologist, Memorial Sloan Kettering Cancer Center
- Dr. Erin McKean, Otolaryngologist, University of Michigan Health System
Dealing with cancer-related fatigue
Virtual Chordoma Community Conference Series, June 2021
Fatigue is one of the most common side effects of cancer treatment. In fact, responses to our Chordoma Survivorship Survey show that 59 percent of chordoma patients and survivors experienced fatigue since being treated. It is important to get help managing cancer-related fatigue as it can have a significant impact on your quality of life. Watch this 60-minute webinar featuring experts, Pouneh Fazeli, MD, MPH, and Eric Roeland, MD, to learn more about the possible causes of fatigue, ways to manage fatigue, and how the Chordoma Foundation can support you.
Options for comprehensive pain management
Virtual Chordoma Community Conference Series, April 2021
Pain is very common among people who have been diagnosed with any type of cancer, including chordoma. But you don’t have to accept pain as a normal part of having chordoma. Watch this 60-minute webinar featuring Maryam Jowza, MD, Staci Martin Peron, PhD, and Sasha Knowlton, MD, to learn about the type of pain you or your loved one might be experiencing, where to get help dealing with it, and how the Chordoma Foundation can support you.
Living Well Webinar: Caring for yourself during stressful times
This 60-minute webinar is packed with excellent tips and strategies for self-care and very helpful information from the featured speakers, Susie Rinehart and Amy Bragman, LCSW.
Ask the Experts Webinar
This 90-minute webinar is packed with excellent questions and very helpful answers from a panel of chordoma experts.
Impact Update Webinar
In this 90-minute webinar, Josh Sommer, the Chordoma Foundation’s Co-Founder and Executive Director, provided an in-depth update on recent progress, current priorities, and how the Chordoma Foundation’s mission is continuing in the midst of COVID-19. After Josh’s presentation, he took questions, along with our Director of Patient Services, Shannon Lozinsky, and then Director of Research, Joan Levy.
Expert Answers Webinar: Making a decision about clinical trials for chordoma
In this 60-minute webinar, medical oncologists and chordoma experts, Dr. Katherine Thornton from the Dana Farber Cancer Institute and Dr. Greg Cote from Massachusetts General Hospital, discuss when you should consider participating in a Research studies involving human subjects that are done to test whether a treatment is safe, and how well it will work to treat a specific disease., how to evaluate which trial is best for you, and what you can expect from the trial participation process.