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Chondrosarcoma CS Foundation, Inc.

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    Holiday Wishes and New Year Programs to Address Unmet Needs

    I want to wish everyone the best for this holiday season. May you all cherish the moments with your family and blessings to you all for a healthy (Pain-free) holiday season and Happy New Year.

    I am amazed by the caring and compassion you have for each other and for everyone that shares their journey. Stay vigilant and Stay Strong. I am equally amazed by the commitment and dedication of medical clinicians, researchers and industry leaders.

    We are very grateful for all the support we have received from donations honoring loved ones, donations supporting our efforts, Community Grants, Estate Grants and our Corporate sponsors especially CSX, Inhibrx and Servier Pharmaceuticals. Because of your generosity we have added more programs (listed below) to address the unmet needs of CS Warriors and Families. We are growing and have hired our first Executive Director: Traci Hurley, M.D. Traci honors her husband Dan, who lost his battle to dedifferentiated chondrosarcoma in August 2023.

    My New Year’s Resolution is to keep fighting this beast and to do everything possible to address our unmet needs. Through our collective efforts, I believe we will find answers to our questions, solutions to our problems, effective treatments that work and ultimately a cure for this horrible ultra-rare cancer. May we all have better days ahead.

    Listed below is a short list of projects we will implement this coming year.

    *February 6: Chondrosarcoma Awareness Day* will be the fifth year the CS Foundation hosts this international event to bring awareness to chondrosarcoma. This is our annual awareness campaign. We encourage everyone to sign our petition to support research and clinical trials and wear something yellow to support the day. We sent yellow wrist bandsto donors encouraging them to wear them on February 6. We also have seven inspirational tributes of chondrosarcoma survivors and those who lost their battle in 2024 to distribute the weeks prior to the Awareness Day: www.csfshayna.org/support-cs-research

    *Chondrosarcoma Patient Registry: *Since our launch in March 2023, we have had 294 CS Patients participate in the registry. Last April we completed our first full data analysis from the data collected from 169 participants who completed their full data sets. The results were shared in social media posts, e-mail blasts and posters presented at the NORD: National Organization for Rare Diseases 2024 Breakthrough Summit in Washington, DC and for 2024 CTOS: Connective Tissue Oncology Society annual meeting in San Diego, CA this past November. The results of our first analysis were comparable to other sarcoma subtypes and other rare diseases. Our results also raised questions that we intend to explore in our next version of the Patient Registry. We have a follow-up survey that is being set up by the NORD IT department and expected to be launched in February. The follow-up survey will provide more information on these unanswered questions. If you are not participating, please consider being part of the registry: http://www.chondrosarcoma.iamrare.org

    *Daniel B. Hurley, M.D. Endowment Fund:* 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, created the: *Daniel B. Hurley, M.D. Endowment Fund*. This fund is available 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: www.csfshayna.org/endowment-fund/

    *New!!! Support Groups: *The Chondrosarcoma Foundation has had requests from patients and family members to host support groups. They expressed a desire to have a forum to share their concerns with those who are also suffering from the debilitating effects of chondrosarcoma both physically and mentally. With a small grant from Servier Pharmaceuticals, the CS Foundation will host two virtual private support groups beginning in January 2025. Elsie Huefner, Ph.D., will facilitate the CS Warrior support group and Julia Parent will facilitate the Family / Caregiver support group. The Patient and Family support groups will meet starting in January every other month. For the schedule and registration, go to: https://csfshayna.org/support-groups/

    *NEW!!! Chondrosarcoma Tumor Board: *In collaboration**with the Aveni Foundation and the Sarcoma Oncology Research Center the CS Foundation will initiate a Chondrosarcoma Tumor Board. This is atreatment planning process in which a multidisciplinary group of medical practitioners who have experience treating chondrosarcoma will meet virtually to review and discuss treatment options for chondrosarcoma cases brought to the board by oncologists across the globe. The goal of the tumor board review is to offer suggestions and recommendations for treatment options in collaboration with presenting oncologists that would be beneficial for patients suffering from conventional and non-conventional chondrosarcoma.

    We honor our Survivors and those who lost their battle to chondrosarcoma by fighting every day, advocating and helping anyway we can. We invite everyone to *Join the Fight!*

    All my best wishes and prayers go out to each of you. Enjoy the holidays and have a happy, healthy, New Year.

    **