Chondrosarcoma Foundation Enters Fourth Year, Marks Progress
BOWIE, Maryland, May 12—The Chondrosarcoma (CS) Foundation will commemorate its third anniversary by continuing to educate the public about this rare bone cancer, advocate for patients fighting the disease and conduct a 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.
“My daughter Shayna wanted to help others suffering from this rare deadly bone cancer,” CS Foundation President Jeffrey Kramer said. “She was always thinking about other people and never complained about her plight. Before she lost her battle with this beast, I made her a promise that I would honor her legacy and her wish. In doing so, we created the Chondrosarcoma Foundation.”
Kramer added: “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.”
Because chondrosarcoma is rare there are only a handful of research and clinical trials. 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 confirm these findings.
During the past three years, the CS Foundation has hosted four 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.
Finally, on 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 wrist bands to raise awareness about Chondrosarcoma as well as creating fund raising activities to support the Foundation’s mission.
Chondrosarcoma Patient Registry
The CS Foundation most ambitious project 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.
At present with two months in, we have 64 participants in the registry. In Mid-May we are going to conduct our first pass into looking at the responses of our participants to get a snapshot of our community, to address knowledge gaps including demographics, family, and medical history and get an early snapshot to determine if there are any trends and cause and effect relationships.
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.
We want to include your story and encourage your participation in the registry. This is our way of collectively making a difference. Entering your data is easy. Just log in to your account at https://chondrosarcoma.iamrare.org and click the Take Survey button for each survey under the Chondrosarcoma Patient Registry.