Chordoma Foundation

Chordoma support groups and meetups

Even though I’m one in a million, I’m not alone.

Alicia Jeffreys

chordoma survivor

Virtual support groups

A rare disease like chordoma can be lonely, so we provide ways for patients, survivors, and co-survivors to connect with one another. This includes professionally facilitated virtual support groups, where you can come together with other people affected by chordoma to support and learn from one another, make new connections, and exchange information.

The groups are formally run by talented facilitators who have experience providing support and resources to those affected by cancer. Once a month, the groups meet for an hour on Zoom. To maximize discussion and connection, registration for each group is limited to 25 people on a first-come, first-served basis every month.

Patients and survivors support group

About the facilitator: Jennifer Bires has over a decade of experience running groups for people impacted by cancer. Jennifer is the Executive Director of Life with Cancer and Patient Experience for the Inova Schar Cancer Institute. She works to ensure that patients, survivors, and their family members have access to psychosocial care at no cost to them to help individuals cope with cancer, its treatments, and survivorship in the best possible way. She specializes in working with young adults who have been diagnosed with cancer, communication around end of life concerns, and sexual health. Jennifer earned her master’s degree from Washington University in Saint Louis and her bachelor’s degree from Clemson University. 

When this group meets: Second Tuesday of each month at 6:00 PM Eastern (U.S. and Canada) Time. 

Who should attend: Anyone who has been diagnosed with chordoma, is currently in treatment, or has been treated in the past is welcome.

Register for the next Patients and Survivors Group »

Caregivers and co-survivors support group

About the facilitator: Megan Whetstone has several years of experience working with oncology patients and chordoma patients specifically providing psychosocial support, counseling, and connection to resources. She is also well-versed in facilitating support programs for patients and caregivers alike. Megan completed her education at The Ohio State University and has over five years of experience in the field.

When this group meets: Third Wednesday of each month at 7:00 PM Eastern (U.S. and Canada) Time. 

Who should attend: Anyone whose loved one has been diagnosed with chordoma, is currently in treatment, or has had treatment in the past. Parents, spouses, siblings, and other family members are all welcome.

Register for the next Caregivers and Co-survivors Group »

NEW! Community-led virtual groups

In addition to the two support groups we host for survivors and co-survivors, in 2022 we will be launching population-specific groups. These groups will be led by members of the chordoma community and are meant to provide a space where chordoma survivors and co-survivors with similar journeys can connect with each other around their unique needs.

The first group to launch will be for adolescents and young adults (AYA), open to patients and survivors ages 16 to 30 years old.

Adolescent and young adult group

About the facilitator: Kaitlin Slepian was diagnosed with poorly differentiated cervical chordoma in 2016 when she was 17 years old. Her cancer diagnosis transformed her life and was a catalyst for her passion to work with children and families experiencing the challenges of illness and hospitalization. She has significant experience working with children and families in stressful situations as well as a background in child development and family dynamics. She is excited to lead the AYA support group to help create a sense of community among younger patients and survivors. Kaitlin received a BS in Family Studies and Human Development from the University of Arizona and is currently pursuing her MS in Child Life and Family-Centered Care at Boston University.

When this group meets: The first Sunday of the month at 2 PM Eastern (U.S. and Canada).

Who should attend: Anyone ages 16 to 30 years old who has been diagnosed with chordoma

Register for the next AYA group »

International virtual support groups and online communities

Zoom-Café Germany

About the facilitators: Irene Badura is the Chordoma Foundation’s Ambassador for Germany. Her grandson was diagnosed with chordoma in 2019. She works as a neuropsychologist in an early rehabilitation facility in southern Germany. Carolina Herzfeld was diagnosed with chordoma in 2015. She firmly believes that, in addition to professional medical care, healing requires patients and caregivers to connect and exchange experiences.

When this group meets: Every third Tuesday every other month, next meeting is scheduled for January 17, 2022, 19:30 CEST

Who should attend: The group is for anyone with chordoma and/or their loved ones. Please note that the language of communication in this group is German.  Email kimberley@chordoma.org to register

WhatsApp group Israel

About the facilitator: Uri Melzer was diagnosed with sacral chordoma in March 2021, at the age of 63. He was recommended an en-bloc resection in Israel, which was not a favorable option due to the quality of life issues that could arise after the surgery. Carbon-ion radiation therapy was mentioned as an alternative to surgery. After researching this option and talking to others who underwent this treatment, Uri decided to have carbon-ion radiation therapy at MedAustron in Austria. He successfully completed 16 sessions in May 2021, and since then has remained stable. 

Who can join: This WhatsApp group is for anyone with chordoma and/or their loved ones in Israel. Please email kimberley@chordoma.org for the link to join the group. 

Other international virtual support group meetings

The Chordoma UK Chat & Cheers group

About the facilitator: Sylvie Leslie is a chordoma patient as well as Trustee and Director of Chordoma UK. Chordoma UK supports chordoma patients and their loved ones and invests in research, focusing on the role of brachyury in chordoma.

When this group meets: Virtually on the last Thursday of every month at 7.30pm BST

Who should attend: The group is for anyone with chordoma and/or their loved ones. For additional information, please contact Sylvie Leslie.

This group is not organized by the Chordoma Foundation.

 

Chordoma meetup groups

In addition to the Foundation’s virtual support groups, regional meetup groups may be available to chordoma patients, survivors, and co-survivors. If you’re in the midwest (Chicago and surrounding areas), reach out to Noreen Potempa for details. Currently, that group meets virtually.

We’ll keep this page up to date if and when additional meetups are organized in other areas.

 

As options for support and connection continue to expand, we hope everyone affected by chordoma can know they are not alone.

In addition to our virtual support groups, we offer numerous additional opportunities to connect to others and their stories. We encourage you to join our online community, talk with or become a Peer Guide, and read or submit an Uncommon Story.

Please note: All groups listed on this page are offered to the chordoma community free of charge as a source of emotional support and do not constitute mental health treatment. If you are in need of mental health treatment, please contact your healthcare team for a referral to a mental healthcare practitioner. 

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