2021 Virtual Chordoma Community Conference Series
In 2021, we hosted a Virtual Chordoma Community Conference (CCC) Series of five webinars about some of the most common quality of life challenges you face.
Based on our Chordoma Survivorship Survey’s initial findings, the webinars focused on a physical, emotional, or practical challenge that commonly affects patients, caregivers, survivors, and co-survivors. These free, live, one-hour webinars featured expert clinicians and specialists who specialize in the specific challenge. Watch the recordings below to learn about the issues, what treatments are available, and how to access them.
As part of the 2021 Virtual CCC Series, we also once again hosted a 90-minute “Ask the Experts” webinar offering real-time answers to questions about chordoma. At our in-person Chordoma Community Conferences, the Ask the Experts Q&A panel is always one of the most valuable and well-attended sessions, and our Ask the Experts webinars in 2020 and this year proved to be the same.
Schedule
2021 Virtual CCC Series
July
Ask the Experts
October
Improving balance, strength, and mobility after treatment
November
Coping with anxiety, depression, and grief
Coping with anxiety, depression, and grief
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
Following the presentations, our Director of Patient Services, Shannon Lozinsky, MSW, led a question and answer session with the experts and discussed ways the Chordoma Foundation can support you.
Panelists
Jennifer Bires, MSW, LCSW, OSW-C
Executive Director
Life with Cancer and Patient Experience
Inova Schar Cancer Institute
Megan Whetstone, LCSW
Oncology Social Worker
Kelsey-Seybold Cancer Center
Information provided by the panelists is not patient-specific and is not medical advice. Please follow up with your doctor to discuss the information you learn from this webinar.
Improving balance, strength, and mobility after treatment
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
Following the presentations, our Director of Patient Services, Shannon Lozinsky, MSW, led a question and answer session with the experts and discussed how the Chordoma Foundation can support you.
Panelists
Justin Brown, MD
Reconstructive Neurosurgeon
Massachusetts General Hospital
Lisa Ruppert, MD
Cancer Rehabilitation Expert
Memorial Sloan Kettering Cancer Center
Information provided by the panelists is not patient-specific and is not medical advice. Please follow up with your doctor to discuss the information you learn from this webinar.
Ask the Experts
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.
Panelists
Ed Les, MD
Moderator, Clival chordoma survivor, CF Board member, Chair of CF Patient Services Committee
Ziya Gokaslan, MD
Spine Neurosurgeon
Brown Medical School and Lifespan Hospitals
Vinai Gondi, MD
Radiation Oncologist
Northwestern Medicine Chicago Proton Center
Mrinal Gounder, MD
Medical Oncologist
Memorial Sloan Kettering Cancer Center
Erin McKean, MD, MBA, FACS
Otolaryngologist
University of Michigan Health System
Information provided by the panelists is not patient-specific and is not medical advice. Please follow up with your doctor to discuss the information you learn from this webinar.
Dealing with cancer-related fatigue
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. In this webinar, experts Pouneh Fazeli, MD, and Eric Roeland, MD, talk about the possible causes of fatigue, ways to manage fatigue, and how the Chordoma Foundation can support you.
Featured speakers
Pouneh Fazeli, MD, MPH
Director, Neuroendocrinology Unit
University of Pittsburgh Medical Center
Associate Professor of Medicine
University of Pittsburgh School of Medicine
Eric Roeland, MD
Palliative care and medical oncology physician
Assistant Professor of Medicine
Oregon Health & Science University
Information provided by the panelists is not patient-specific and is not medical advice. Please follow up with your doctor to discuss the information you learn from this webinar.
Options for comprehensive pain management
April 2021
Responses to our Chordoma Survivorship Survey show that, depending on tumor location, as many as 57 percent of chordoma patients and survivors experience chronic pain. 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 more about the type of pain you might be experiencing, where to get help dealing with it, and how the Chordoma Foundation can support you.
Featured speakers
Maryam Jowza, MD
Assistant Professor
Department of Anesthesiology
Division of Pain Medicine
University of North Carolina Health
Sasha Knowlton, MD
Assistant Director of Cancer Rehabilitation
Department of Physical Medicine and Rehabilitation
Spaulding Rehabilitation Network and Harvard Medical School
Staci Martin Peron, PhD
Clinical and Training Director
Health Psychology and Neurobehavioral Research Program
Pediatric Oncology Branch
National Cancer Institute
Information provided by the panelists is not patient-specific and is not medical advice. Please follow up with your doctor to discuss the information you learn from this webinar.
Stay tuned for details about other webinars in the 2021 Virtual CCC Series!
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Webinar Library
In addition to the 2021 Virtual Chordoma Community Conference Series, the Chordoma Foundation periodically hosts free live webinars featuring researchers, clinicians, specialists, and patients to help you learn about various aspects of chordoma. Recordings are available in our Webinar Library.