Holiday Wishes and A Commitment to Provide Leadership 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.
The CS Foundation has been active for over five years and has established some credibility among the chondrosarcoma community, rare cancer patient advocacy community and the multidisciplinary medical community. This past year we took a step forward to provide leadership and set the agenda to address the unmet needs of chondrosarcoma patients and families with the priority to address how we can prevent chondrosarcoma disease progression: recurrence and metastasis.
Chondrosarcoma Foundation Think Tank: The Chondrosarcoma Foundation held its first in-person meeting on November 11 at the Doubletree hotel in Deerfield Beach, Florida. The Think Tank addressed advancing chondrosarcoma treatment and preventing disease progression: recurrence and metastasis. The meeting was held the day before CTOS 2025; (Connective Tissue Oncology Society). Our meeting had 107 registrations from 17 different countries: consisting of multidisciplinary medical professions including oncologists, pathologists, orthopedic surgeons, radiology oncologists as well as patients and caregivers. In addition, we had a dozen participants from about ten patient advocacy groups attend as well.
We took the opportunity to host this event because CTOS was hosting their 30th Anniversary Conference and they brought in over 1200 sarcoma experts worldwide. They designated Chondrosarcoma the “disease of the year” and held a special session to address the latest research findings for Chondrosarcoma. This included the results of a Phase 2 Clinical trial from Inhibrx on the medication they named as Ozekibart (formally INBRX 109). Their blinded study indicated a 52% success rate with participants demonstrating a statistically significant and clinically meaningful improvement in progression-free survival as well as improvements in patient quality of life. Jeff Kramer was honored to introduce Robin Jones, M.D. the Principal Investigator from the Marsden Institute in the UK; who presented the results.
Based on the feedback we received, the Think Tank was a huge success. The Chondrosarcoma Foundation, think tank and the emerging Ozekibart clinical trial were the “buzz” at CTOS. It was the right time; right place and the conditions were right to bring attendees together from across the globe to focus on advancing Chondrosarcoma Treatment and the prevention of disease progression: recurrence and metastasis.
We know how important it will be to keep the momentum going and for the next few months, we will distribute the content presented at the Think Tank, and post video segments of our think tank on our social media sites. Will are focused on the mission to address preventing disease progression, local recurrence, and metastasis by the creation of the Think Tank end product, a meeting summary to introduce a strategic plan for the Chondrosarcoma Foundation to obtain and build resources that will advance the prevention of disease progression, introduce new research and expand clinical trials and advance the treatment of chondrosarcoma.
Chondrosarcoma Tumor Board: In collaboration with the Aveni Foundation and the Sarcoma Oncology Research Center the CS Foundation initiated a Chondrosarcoma Tumor Board. With the efforts of our Executive Director: Traci Hurley, M.D.; we built the infrastructure to host the Chondrosarcoma Tumor Board and have over 30 multidisciplinary medical professionals that treat chondrosarcoma participating. To date we have presented four cases. This is a treatment planning process in which a multidisciplinary group of medical practitioners who have experience treating chondrosarcoma 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 that would be beneficial for patients suffering from conventional and non-conventional chondrosarcoma. This coming year, we plan to meet a monthly basis to address cases and treatment innovations.
Listed below is a short list of projects we will continue to implement this coming year.
February 6: Chondrosarcoma Awareness Day will be the sixth 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 bands to 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 2025 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 343 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 now have a follow-up survey to provide more information on these unanswered questions. We are also expanding to include genomic sequencing, pathology, radiology to dig deeper into the causes and critical microbiological patterns of chondrosarcoma. If you are not participating, please consider being part of the registry: 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/
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 is hosting virtual private support groups and will resume in January 2026. For the schedule and registration, go to: https://csfshayna.org/support-groups/
USA Pickleball Sarcoma Early Detection Campaign: USA Pickleball is the National Governing body for the sport of pickleball in the US. It provides players with official rules, tournaments, rankings and promotional materials. Jamie Elliott, a pickleball champion, an ambassador to USA Pickleball and a patient diagnosed with Dedifferentiated Chondrosarcoma reached out to USA Pickleball to initiate a Public Relations campaign for the Early detection of Sarcomas. According to Jamie, “If my Chondrosarcoma was not detected early, I probably would not be here today.”
The USA Pickleball National Tournament took place in San Diego from November 15-23. A short video was aired on the stadium video board as well as the Ad (above) in the tournament program, to introduce the Sarcoma Early Detection campaign and shed light on Sarcoma’s and the need for Early Detection to save lives. SARC and the Chondrosarcoma Foundation teamed up to create the Smashing Sarcoma website to accompany the article. The website is live: https://smashingsarcoma.org
Holiday Wishes: 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!
Our 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. All our best wishes and prayers go out to each of you. Enjoy the holidays