Chondrosarcoma Foundation Enters Fifth Year, Marks Progress
The Chondrosarcoma (CS) Foundation will commemorate its fourth anniversary by continuing to educate the public about this rare bone cancer, advocate for patients fighting the disease and will report on 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.
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. 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 four years, the CS Foundation has hosted five 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. 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.
We just completed our first full analysis of the data in the registry and will be reporting the results next month. 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.
Dan Hurley Endowment Fund
Daniel Brian Hurley, M.D. passed away August 3, 2023, from dedifferentiated chondrosarcoma at age 50. Dan was a compassionate and highly competent Otolaryngologist, trusted advisor, and respected leader to physician peers and patients. He was a selfless person, always wanting to help and make things better for others. Dan Hurley MD was outraged when his insurance company denied a PET scan requested by his physician which resulted in his care plan being altered. This incident, in conjunction with an insurance denial of his son’s orthopedic surgery a few years earlier, fueled his desire to enact change. He enrolled in law school to dedicate himself to fighting for dignity and justice for chondrosarcoma (and other) patients. Dan’s mission was to bring transparency and accountability to the physicians on the insurance side who are denying and delaying care as recommended by the patient’s chosen physician. He recognized the magnitude of this issue through personally experiencing frequent denials and delays in his own care. Based on his experience, Dan joined the Chondrosarcoma Foundation and authored an article on navigating through the insurance authorization process and the subsequent denials for the Foundation’s website.
Insurance Authorizations and Getting Your Care Approved (csfshayna.org)
Honoring Dan Hurley’s Legacy:
In honor of Dan Hurley, M.D., and his wish to end insurance denials for cancer patients, the Chondrosarcoma Foundation along with Dan’s family, friends and patients are establishing the: Daniel B. Hurley, M.D. Endowment Fund. This fund will provide advice and if necessary legal aid to any Chondrosarcoma patient that has been (1) discriminated against because they cannot work and/or (2) received an insurance claim denial for the diagnosis and /or treatment of Chondrosarcoma.
What to do if you need legal services:
If you or a family member has been discriminated at work because you were diagnosed with chondrosarcoma or were denied an insurance claim for diagnostic or treatment services and you desire to consult with an attorney; please send an e-mail with the details of the incident and any supporting documents to: endowment@csfshayna.org
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