The Chondrosarcoma Foundation Enters Year Seven with an Ambitious Strategic Plan
The Chondrosarcoma (CS) Foundation will commemorate its sixth anniversary by continuing to educate the public about this ultra rare bone cancer, advocate for patients fighting the disease, expand the Chondrosarcoma Patient Registry and report on our global natural history study.
On May 14, 2020, at the height of the pandemic, the CS Foundation was officially incorporated, six months after Shayna Elise Kramer lost her battle with Chondrosarcoma 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 very 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.
The CS Foundation shares the latest research, technological innovations, medications, and treatments. Clinical Research has identified medications that can be used to inhibit, suppress, or destroy Chondrosarcoma cancer cell growth but more research and clinical trials are needed to support these findings. The CS Foundation is involved in helping to create new clinical trials with combination therapies to fight the aggressive subtypes including mesenchymal and dedifferentiated chondrosarcoma.
CS Foundation Activities
During the past 6 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.
February 6 (Shayna’s birthday) the Foundation promotes Chondrosarcoma Awareness Day. Over 5,000 people from around the world have signed the Foundation’s petition and wear yellow ribbons and wrist bands to raise awareness about Chondrosarcoma as well as creating fund raising activities to support the Foundation’s mission.
Chondrosarcoma Foundation hosted its first Think Tank.
On November 11, 2025, in Boca Raton, Florida; the Chondrosarcoma Foundation hosted its first Think Tank entitled: Advancing Chondrosarcoma Treatment, Preventing Disease Progression, Recurrence & Metastasis. The Think Tank presenters were multidisciplinary sarcoma specialists who were known experts treating chondrosarcoma. It included seven sessions addressing the continuum of care from early detection, diagnosis, surgery, intervention, research and clinical trials. The videos and transcripts of each topic that were presented in the Think Tank are posted on the web site: https://csfshayna.org/thinktank/
Chondrosarcoma Strategic Plan
Feedback from the Think Tank held the past November addressed gaps in longitudinal clinical and molecular data, underscoring the need for a robust patient registry capable of informing both real-time care decisions and future clinical trials and research. In response, the Chondrosarcoma Foundation has created a strategic plan to meet unmet patient needs, increase the frequency of the Chondrosarcoma Tumor Board meetings and expand our existing IRB approved Chondrosarcoma Patient Registry to include a patient biobank and the analysis of genomic and transcriptional elements of chondrosarcoma.
Since March 2023, the CS Foundation has been working with NORD: National Organization for Rare Diseases to develop a Patient Registry / Natural History Study. 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 provides Patient Reported / Real World data for researchers to use to advance drug development and treatment options to help improve patient care.
We are in the process of expanding the Patient Registry by creating the Chondrosarcoma biobank. It will establish a comprehensive atlas to enable therapeutic discovery through integrated DNS, RNA and Germline profiling, and open data sharing. The project has two objectives: (1) generate a high-quality, annotated biospecimen resource for chondrosarcoma and (2) create a web-based platform to integrate and disseminate data and models to the broader research community. This effort will facilitate the identification of novel therapeutic targets and support the development and testing of new treatment strategies. In addition, by providing a centralized and collaborative platform, this effort will strengthen research partnerships across institutions and disciplines. The goal will be to utilize the biobank as a resource for improved therapeutic options and better clinical outcomes for patients with chondrosarcoma.
Thank You for Your Support
During the past six 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. We have had others like Julie Mathews that supported 5K walk / runs and Jamie Elliott Shuey to play in fundraising Pickleball tournaments. 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. Most recently Ernest Castro sponsored an Auto Show, raising $27,000 to honor his 16-year-old grandson who battles mesenchymal chondrosarcoma. The money raised will be used to build the Chondrosarcoma biobank and the project will be named for his grandson Alex.
The most elaborate and daring fund-raising event came from Ricky Ashman from Sussex England to honor his Mum (a CS Survivor). Four years ago, Ricky raised $1,500 US dollars for the Foundation by sky diving 15,000 feet. We invite you to check out his sky diving video by clicking the link below.
Ricky Ashman – This is the video of how my Sky Dive went down… | Facebook
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 for the past six years.
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, we will find a cure.
For more information, visit the Foundation’s website: www.csfshayna.org or contact Jeffrey Kramer, President, Chondrosarcoma CS Foundation, Inc. at [email protected]