Chondrosarcoma Foundation Enters Sixth Year and Marks Progress, Accomplishments and New Initiatives
The Chondrosarcoma (CS) Foundation will commemorate its fifth anniversary by continuing to educate the public about this rare bone cancer, advocate for patients fighting the disease and will report on their global natural history study.
On May 14, 2020, the CS Foundation was incorporated, six months after Shayna Elise Kramer lost her battle with Chondrosarcoma. Shayna tragically lost her life at the young age of 28. Rather than dwelling on her own struggle, Shayna expressed a desire to educate the world about Chondrosarcoma. She learned there was little public knowledge about Chondrosarcoma and no platform where doctors and health care professionals could share information and best practices regarding treatment to specially address Chondrosarcoma. Shayna wanted to help others suffering from this rare deadly bone cancer, she was always thinking about other people and never complained about her plight. Before she lost her battle with this beast, her father, Jeff Kramer made her a promise that I would honor her legacy and her wish. In doing so, we created the Chondrosarcoma Foundation.
The mission of the Foundation is to educate the public about Chondrosarcoma; support and advocate for patients and families who are suffering from this disease; advocate to improve the treatment and care for these patients; and fight for more compassionate care, eliminating barriers and promoting the patient’s right to receive treatment, especially if it is potentially lifesaving.
Accomplishments
1. Virtual Dialogues
During the past five years, the CS Foundation has hosted six International Virtual Dialogues to bring prominent clinical researchers and medical professionals with patients and caretakers. These forums have helped to establish a dialogue on chondrosarcoma and have helped the foundation expand its mission. All of the Virtual Dialogue events were recorded and are archived on the Chondrosarcoma Foundation Website: https://csfshayna.org
2. Chondrosarcoma Patient Registry
The CS Foundation is working with NORD: National Organization for Rare Diseases to develop a Patient Registry / Natural History Study which was launched on March 1, 2023. The Chondrosarcoma Patient Registry is a platform for patients around the world to strengthen their voices and collectively share information about this rare bone cancer. This global resource will provide data for researchers to use to advance drug development and treatment options to help improve patient care.
We just completed our first full analysis of the data in the registry and have initiated the Chondrosarcoma Patient Registry 2.0 with follow up surveys. The patient information that the registry collects will help give direction to sarcoma specialists and scientists areas in which to focus their research efforts, and to hopefully allow clinicians to see trends in patient responses to treatment for chondrosarcoma. The hope for the future is to illuminate treatments and procedures that have had some success and that may become the standard of care for this rare bone cancer.
3. Chondrosarcoma Patient / Family Advisory Board
In the effort to create a voice for chondrosarcoma patients and caretakers to address concerns and advocate for effective treatment and quality care; the Chondrosarcoma Foundation created a patient / family / caregiver advisory board. The advisory board serves to give those afflicted with this rare disease an opportunity to share their personal journeys, provide their point of view and insight into research, clinical trials; treatment and address related policies and procedures that effect their medical decisions and contribute to better care and solutions towards treatment. Future efforts from the advisory board include addressing concerns, challenges, barriers, and unmet needs that interfere with getting treatment and/or entry into clinical trials or obtaining new medications.
The advisory board has met on several occasions and the result of the meetings was the development of helping guides for chondrosarcoma patients who were either newly diagnosed, or those who experienced disease progression. Four guides (listed below) were developed and posted on the Foundation web site. When inquiries are made by newly diagnosed or recurring patients or family members, the documents are sent directly via e-mail as resource material. Each article is full of very useful information and presented with infographics to make them easy to read and understand.
Chondrosarcoma: What You Need to Know
https://csfshayna.org/site/wp-content/uploads/Chondrosarcoma_what_do_you_need_to_know.pdf
Selecting A Sarcoma Treatment Center
https://csfshayna.org/site/wp-content/uploads/Selecting_a_Sarcoma_Center_Final.pd
Insurance Authorizations and Getting Your Care Approved
https://csfshayna.org/site/wp-content/uploads/Insurance_Authorization_and_Getting_Your_Care_Approved.pdf
Making the Decision to Enroll in a Clinical Trial
https://csfshayna.org/site/wp-content/uploads/Enrolling_in_clinical_trial-CSF_Guide.pdf
4. Chondrosarcoma Patient / Family / Caregiver Support Groups
The CS Support Group project addressed the unmet needs of chondrosarcoma patients, caregivers and family members who are looking for opportunities for support. Several members of the CS Foundation as well as requests by chondrosarcoma patients and family members have asked the Chondrosarcoma Foundation to host support groups. Data from our Chondrosarcoma Patient Registry indicates that the quality of life regarding mental health is less than what exists for other cancer patients. Both patients and family members expressed a desire to have a forum to share their concerns to those who are also suffering from the debilitating effects of chondrosarcoma both physically and mentally.
In response, the Chondrosarcoma Foundation hosted a virtual dialogue attended by 65 CS patients, caregivers and family members on October 30, 2024 entitled: Improving Stress, Anxiety, Depression and Quality of Life. The presenters were Elsie Huefner, Ph.D., a doctoral-level licensed Clinical Mental Health Counselor specializing in trauma, anxiety, depression, and substance abuse. Elsie was diagnosed with Dedifferentiated Chondrosarcoma on June 12, 2023, following a misdiagnosis of arthritis and bursitis; and Julia Parent, LCMHC, a Licensed Clinical Mental Health Counselor. In 2016 Julia was diagnosed with breast cancer, formally labeled: invasive ductal carcinoma with lobular features. After the Virtual Dialogue beginning in January, 2025 the CS Foundation hosted and continues to host monthly support group meetings. Elsie has been the facilitator for the Chondrosarcoma Patient Support Group and Julia facilitates the Family / Caregiver Support Group. The attendance has grown for each meeting and the feedback has been very positive from the participants.
5. Dan Hurley Endowment Fund
Daniel Brian Hurley, M.D. passed away August 3, 2023, from dedifferentiated chondrosarcoma at age 50. Dan was a selfless person, always wanting to help and make things better for others. Dan Hurley MD was discouraged when his insurance company denied a PET scan requested by his physician which resulted in his care plan being altered. This incident, in conjunction with an insurance denial of his son’s orthopedic surgery a few years earlier, fueled his desire to enact change.
In honor of Dan Hurley, M.D., and his wish to end insurance denials for cancer patients, the Chondrosarcoma Foundation along with Dan’s family, friends and patients are establishing the: Daniel B. Hurley, M.D. Endowment Fund. This fund is used to provide legal advice and if necessary legal aid to any Chondrosarcoma patient that has been (1) discriminated against because they cannot work and/or (2) received an insurance claim denial for the diagnosis and /or treatment of Chondrosarcoma.
6. Chondrosarcoma Awareness Day
Every February 6 (Shayna’s birthday) the Foundation promotes Chondrosarcoma Awareness Day. So far, over 5,000 people from around the world have signed the Foundation’s petition and wear yellow ribbons and/or wrist bands to raise awareness about Chondrosarcoma as well as creating fund raising activities to support the Foundation’s mission. Each year we pay tribute to survivors and those who lost their battle with chondrosarcoma by sharing their life journeys.
What’s Next?
Chondrosarcoma Tumor Board
The Chondrosarcoma Tumor Board, a specialized, multidisciplinary group of medical professionals who treat chondrosarcoma. The tumor board will review cases submitted by physicians/oncologists globally and offer specialized treatment recommendations for chondrosarcoma. The Tumor board will not replace local tumor boards, it will however address aggressive sub-types of chondrosarcoma and cases where treatment options have been exhausted. It will also help patients living in parts of the world where treatment for chondrosarcoma is non-existent. The board will meet virtually as needed to review and discuss treatment options for cases submitted by physicians / oncologists from around the world.
We are hopeful that the existence of the tumor board will enhance treatment approaches for chondrosarcoma patients worldwide and serve as a valuable educational resource for medical professionals to advance the care of this ultra-rare bone cancer.
Chondrosarcoma Foundation Think Tank, November 11 Boca Raton, Florida
Title: Advancing Chondrosarcoma Treatment: Preventing Disease Progression, Recurrence & Metastasis
The Chondrosarcoma Foundation Think Tank is scheduled for November 11 at the Doubletree Hotel in Deerfield Beach – Boca Raton, Florida. This event will be the first time the Chondrosarcoma Foundation has met in-person. We intentionally planned this meeting to occur the day before the start of the CTOS Annual meeting in Boca Raton. The mission of the think tank is to bring together multidisciplinary medical experts, researchers, industry, government regulators, patients and caregivers from our support groups and patient / caregiver advisory board, and advocates (all with a stake in treating chondrosarcoma) to discuss what we can collectively do to advance precision medicine and treatment for chondrosarcoma. Our first challenge to address on November 11 will be on preventing disease progression, local recurrence, and metastasis. Guided discussions will be facilitated by selected presenters / panelists who will review past efforts, progress made, challenges, barriers, and proposed pathways to address the challenge of preventing disease progression, recurrence, and metastasis. Discussions will Identify areas of need, stakeholders / contributors, collaboration efforts, progressive measurable solutions, and funding opportunities. The product of the think tank will be a meeting summary to support a strategic plan for the Chondrosarcoma Foundation to obtain and build resources that will advance prevention of disease progression and advance effective care.
Thank You for Your Support
During the past five years many CS Patients, caregivers, family members and friends have supported the Foundation through their donations and fund-raising activities. We received donations from family members in honor of their lost loved ones to this beast. We have had others that supported 5K walk / runs. Lifecycle holdings in Franklin, Tennessee hosted a biking event to honor an employee with CS. Amber Sarcone, a teacher and guidance counselor with CS challenged her students to raise money for the Foundation and gave the class the raised the most money a pizza party.
For the past four years the Foundation has organized and hosted a 5K Run / Walk in Mid-October we call “Steppin’ for the Cause.” Last year we also teamed up with HundredX for a fund-raising activity that paid participants who signed up $1.60 for each survey they completed on goods and services. Every time we host an event, we have a core group of Shayna’s friends and our friends and family join us. The core group is the heart of honoring Shayna’s legacy and keeping her memory alive in our hearts.
In addition to family and friends, we are grateful for our corporate donors including Fox & Roach Trident Charities, a subsidiary of Berkshire Hathaway in Devon, PA and CSX Transportation from Andover, MA. Finally, we appreciate the opportunities and support to work with Inhibrx, a biomedical company based in San Diego, CA. and Servier Pharmaceuticals, headquartered in France with an office in Boston, MA. Both companies have supported the CS Foundation and their activities.
Our fight against chondrosarcoma will continue through our efforts to educate, advocate, and contribute to research, clinical trials to improve care and hopefully one day soon, find a cure.
For more information, visit the Foundation’s website: www.csfshayna.org or contact Jeffrey Kramer, President, Chondrosarcoma CS Foundation, Inc. at info@csfshayna.org