Invitation to Oncologists and Sarcoma Specialists: Register for Virtual Dialogue: Straight Talk About Chondrosarcoma
Straight Talk About Chondrosarcoma
A Virtual Dialogue (Via Zoom)
Tuesday, November 17, 2020
7:30pm – 8:30pm EST
www.csfshayna.org/straight-talk-registration/
Please share and circulate this invitation to all Oncologists and Sarcoma Specialists:
On Tuesday, November 17, 2020 from 7:30pm -8:30pm EST, 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 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.
I founded the CS Foundation to keep a promise to my daughter Shayna Elise Kramer, before she lost her battle to this deadly bone and tissue cancer. 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 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. Research and clinical trials 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.
Like we were with Shayna; 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 and god willing a cure 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 Oncologists and Sarcoma Specialists the opportunity to understand the challenges in diagnosing and treating Chondrosarcoma.
A July, 2020 survey by the Bone Cancer Research Trust found that 76% of all patient’s with Chondrosarcoma were misdiagnosed, allowing the disease to progress. My daughter who was 25 years old at the time was misdiagnosed as having scoliosis and given exercises and over a year elapsed before an MRI revealed it was CS resulting in a tumor the size of a football.
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, 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: www.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 will be joined by Adrienne Flanagan, M.D. and William Cross. M.D. from the UCL Cancer Institute in London and will share their research on how mutations in Chondrosarcoma change over time, and how a simple blood test can identify biomarkers that can be used to make earlier diagnosis and earlier interventions.
Following these presentations, 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 questions and have a virtual dialogue with Sarcoma Specialists and experts that attend. So far we have 49 CS Patient’s and family members registered. We need your participation and are reaching out to you as an Oncologists, Radiologists, Sarcoma Experts, and Clinical Research Experts to join us on the Zoom platform on Tuesday, November 17.
To register for the event go to www.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.
Please register and plan to attend this event. There are no fees. 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.