Chondrosarcoma Foundation Enters Third Year, Marks Progress
BOWIE, Maryland, May 10—The Chondrosarcoma (CS) Foundation will commemorate its second anniversary by continuing to educate the public about this rare bone cancer and advocate for patients fighting the disease.
On May 14, 2020, the CS Foundation was launched, six months after Shayna Elise Kramer lost her battle with Chondrosarcoma. Shayna tragically lost her battle at the young age of 28. Rather than dwelling on her own struggle, Shayna expressed a desire to educate the world about Chondrosarcoma. Shayna 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 a trial treatment, especially if it is potentially life-saving.”
Among the Foundations activities and accomplishments includes education to the public, physicians and even oncologists who are unaware of Chondrosarcoma.
Because Chondrosarcoma is rare there are only a handful of research and clinical trials. The CS Foundation shares the latest research, technologies 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 two years, the CS Foundation has hosted four International Virtual Dialogues to bring prominent clinical researchers and medical professionals with patients and caretakers.
The CS Foundation most ambitious project is working with NORD: National Organization for Rare Diseases to develop a Patient Registry / Natural History Study. The Foundation is currently in the onboarding process in the effort to create an aggregate database on Chondrosarcoma.
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 to raise awareness about Chondrosarcoma as well as creating fund raising activities to support the Foundation’s mission.
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