Chondrosarcoma Foundation Hosts: Straight Talk About Chondrosarcoma.
On Tuesday, November 17, 2020 from 7:30pm -8:30pm, the Chondrosarcoma CS Foundation, Inc. will host a virtual dialogue using the zoom platform to reach out to sarcoma experts, and oncologists as well as patients diagnosed with Chondrosarcoma and their family members. The forum is entitled: Straight Talk About Chondrosarcoma. This event will provide an opportunity for Chondrosarcoma Warriors (Cancer Patients) to ask questions and seek answers about their medical condition and it will allow Sarcoma experts to learn more about this rare bone and tissue cancer and listen to the concerns of CS patients and their families.
Chondrosarcoma (CS) is a very rare cancer affecting about 600 patients per year. The purpose of the Chondrosarcoma Foundation is to educate the public about Chondrosarcoma and provide support and advocacy for patients and families that are suffering from this disease. Because Chondrosarcoma is such a rare disease, it has not received the attention like other more common cancers like Breast Cancer but deserves the same attention. There is no known treatment protocol beyond surgery and the disease is deadly and incurable. Research and clinical trails get lumped into other sarcomas and trials dedicated to Chondrosarcoma exclusively are almost non-existent. The general medical community is also uninformed and many times the diagnosis of Chondrosarcoma is missed resulting in a loss of precious time to treat the disease.
Our advocacy efforts focus on improving the treatment and care for CS patients. We also advocate and promote positive changes including a viable treatment protocol, early detection, proper surveillance, more efficient and relevant information dedicated to Chondrosarcoma. Most importantly the foundation advocates for more compassionate care, cutting through red-tape and promoting the patient’s right to receive treatment especially if it is potentially life-saving.
Jeffrey Kramer founded the organization because he made a promise to his daughter Shayna Elise Kramer that he would carry out her mission and honor her legacy. Shayna expressed a desire to educate the world about Chondrosarcoma so she could help others suffering from this rare deadly disease. She was always thinking about other people and never ever complained about her plight. Shayna lost her battle from this rare disease on November 14, 2019.
The Chondrosarcoma Foundation rolled out on May 14, 2020 (Six months after Shayna passed away). In less than three months during this pandemic, the infrastructure including obtaining a charitable non-profit certification from the IRS was achieved. The Chondrosarcoma Foundation has built a web site and has had board members including Mike Snyder, author of: No Treatment Options Left and John Gross, M.D. submit detailed commentaries posted on the web site: csfshayna.org/ that provide valuable information to Chondrosarcoma patients and their families.
Chondrosarcoma patients and their families are looking for answers and the CS Foundation wants to help get them the answers they need to make critical decisions about their care. Hosting the Straight Talk Virtual Dialogue meets the mission of the Foundation and brings us one step closer to finding answers to improve the care for Chondrosarcoma.
Straight Talk About Chondrosarcoma will be the first International Forum for Sarcoma Specialists, CS Patients and their Families to focus on Chondrosarcoma. It is an opportunity for CS patients to ask questions and seek answers and give Sarcoma Specialists the opportunity to hear from CS patients.
John Gross, M.D.; a board member of the CS Foundation and Faculty Assistant Professor, Bone and Soft Tissue Surgical Pathology at Johns Hopkins University in Baltimore, MD, He will provide a presentation entitled: Chondrosarcoma: Challenges in Diagnosis, Grading and the Importance of Proper Classification. He submitted an article on this topic in July, 2020 and it is posted in the Commentaries section of the web site: csfshayna.org/commentaries John emphasizes the need to have surgical pathologists accurately diagnose, grade and classify Chondrosarcoma and explains how challenging and difficult that process is but necessary to help oncologists and patients determine the best course of care for their medical condition.
John Gross, M.D.
Following John’s presentation, we will have a Q&A for CS patients and Sarcoma Specialists. Patients and their family members. They will be given the opportunity to ask specific questions about their medical conditions and have a virtual dialogue with Sarcoma Specialists and experts that attend. We will be reaching out to CS patients through Social Media platform Support Groups and will personally reach out to Oncologists, Radiologists, Sarcoma Experts, Research Experts and others to bring them all together on the Zoom platform.
To register for the event go to csfshayna.org/straight-talk-registration scroll down and “click here to register.” All we need is your name and e-mail and the option of giving us a message, information or any questions to consider for the event. Once we receive your registration, we will e-mail you the URL for the Zoom meeting and a password. The forum will also be recorded and posted for future use.
We are hopeful that this first international dialogue on Chondrosarcoma will be a successful and useful event and will be the first of many more to come.