Chondrosarcoma (CS) Foundation Celebrates It First Anniversary
This coming Friday will be the Chondrosarcoma Foundation’s first anniversary. Last year, on May 14, 2020 during the beginning of the pandemic, we launched the Chondrosarcoma Foundation by bringing CS Foundation web site on-line. My daughter Shayna Elise Kramer expressed a desire to educate the world about Chondrosarcoma so she could help others suffering from this rare deadly bone and soft tissue cancer. She was always thinking about other people and never ever complained about her plight. Before she lost her battle from this beast, I made her a promise that I would honor her legacy and her wish. In do so, we have created a Foundation called the Chondrosarcoma (CS) Foundation. The mission of the foundation is to educate the public about Chondrosarcoma; support and advocate for patients and families that 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 life-saving.
During the first year, we recruited 10 board members. Our newest member is Jonathan Trent, M.D. Associate Director, Clinical Research, Director of the Bone and Soft Tissue Sarcoma Group at the Sylvester Comprehensive Cancer Center in Miami, Florida. We have four other oncological specialist including John Gross, M.D. a pathologist from Johns Hopkins; James Snider, M.D.; Director of Radiology Oncology at UAB Medical Center, Karina Galoian, Ph.D.; Director of Research for University of Miami and Ndubuisi Achufusi, M.D. We also have two Chondrosarcoma Survivors, Mike Snyder and David Bowles, Ph.D.; both have done a lot to support the Community of CS Warriors and families fighting this disease.
During the past year we built the infrastructure and complied with all Federal and State regulations to become a reputable 501c3 Non-Profit Charitable Organization. We posted three informative commentaries on our web site, created a news blog with relevant updates on research and hosted two very important virtual dialogues bringing the medical community together with CS patients and families. Videos of the Virtual Dialogues are on our web site and can be accessed by patients and oncologists who want to learn more about Chondrosarcoma.
In addition, we declared February 6: International Chondrosarcoma Awareness Day; and had almost five thousand people from all over the world sign our petition and wear a yellow ribbon giving recognition to this rare and deadly bone and soft tissue cancer.
We accomplished a lot for our first year but have much more work to do. As we enter our second year, I would like to introduce some ideas and objectives to move the Foundation forward and want to solicit your thoughts and assistance.
A. Virtual Dialogue 3:
We are going to schedule our next Virtual Dialogue for Mid-September to address effective pain management strategies, stress and anxiety, especially “scan-anxiety” and fear of recurrence. I could use your help. If any of you know of any experts that promote effective pain management and effective stress management strategies. please e-mail me their contact information so I can reach out and invite them to participate in our next Zoom Virtual Dialogue (info).
It is the mission of the CS Foundation to support and promote positive changes to the treatment of Chondrosarcoma including a viable treatment protocol, early detection, proper surveillance, more efficient and relevant information and research findings dedicated to battling Chondrosarcoma. To create and support networking opportunities for clinical researchers, clinical oncologists, and sarcoma experts to specifically address Chondrosarcoma. To help, support, educate and promote optimal conditions for treating Chondrosarcoma, including new technologies and scientific, clinical, research findings related to improving the treatment of Chondrosarcoma. In support of those general purposes listed above, the CS Foundation shall within its means support research and studies related to the advancement and utilization of applied treatment for Chondrosarcoma. The CS Foundation shall also identify and expose specific ways to ameliorate problems which hinder new innovative treatment techniques and technological progress. And in its educational role, the CS Foundation shall provide information regarding advances in the treatment of Chondrosarcoma, the need for compassionate care, and the need to eliminate barriers to obtain treatment. Whenever possible, the CS Foundation will advocate and promote the patient’s right to receive treatment especially if it is potentially life-saving.
With the mission statement listed we have two goals for our advocacy efforts as well as promote and support our plans listed below:
1. Establish relationships with other cancer related organizations
2. Get a seat at the table in any and all Federal/ State government/ Cancer Coalitions creating policies and funding for cancer related treatment and research.
C. Proposed Future Plans
1. On our last Virtual Dialogue, we were challenged by Adrienne Flanagan to establish a “biobank” of CS patient’s DNA by using her blood test. We are in the process of determining if this is achievable and determining how the CS Foundation can facilitate and participate in an international patient registry (or sub-registry of an existing cancer registry) including genetic data, donated tissue, and clinical information that can be utilized by researchers? And what research institution(s) would benefit the most from such a biobank? My question to CS Warriors and their families is: Do you think it is worth the effort to establish a biobank? I would appreciate your thoughts.
2. Along the lines of the creation of a “biobank of CS patients,” There is a need for a specialized chondrosarcoma-specific genotyping/immunohistochemistry staining panel. A panel which could efficiently and rapidly determine CS patient’s eligibility for research trial therapeutics. This was also suggested by Adrienne Flanagan. Most clinical trials for therapeutics require specific genotypes, cancer or immune system surface markers to determine potential for treatment and care. Most of these biomarkers are not available, even the most up-to-date commercial vendors (Foundation Medicine, Inc.). Custom panels are either not available, not reimbursable by insurers, nor CLIA-certified for clinical use. As such, medical researchers must presently be individually asked to assist with phenotyping out of goodwill, and may be restricted from doing so due to IRB criteria. These limitations all effectively prevent timely access to expanded compassionate care. How can the CS Foundation play a role to create a better solution, especially in reaching out to CS patients who live in parts of the world that do not have the means to treat CS?
3. There is no centralized national clearinghouse or registry for chondrosarcoma, only scarce resources and limited information for patients and families. There are no centralized clinical parameters for chondrosarcoma. As utilized with many other cancers, a serially updated expert consensus document/practice parameter is urgently needed to treat CS. Presently, intermittent review articles are used to substitute for a centralized clinical parameter set. No review article to date has been comprehensive for diagnosis, phenotyping and providing up to date treatment options. How can the CS Foundation play an effective role in facilitating updated practice parameters including recommending that all CS Patients obtain genetic testing?
4. Treatment and care on all levels need to be compassionate, act with urgency and be patient specific. Requirements for clinical trials need to be more flexible and take account the patient’s conditions and their right to obtain treatment. That includes removing the requirement to have the patient show up to the institution in person provide their consent especially if their situation does not warrant travel. Along with the consensus document listed above, how can the CS Foundation serve to help lift the restrictions and help those CS patients, particularly for patients who lives outside the US and Europe and especially for patients in life saving situations. How can we help CS patients gain better access to care?
We welcome and value your thoughts on the proposed plans we listed above. Please give some thought and consideration to them and send your thoughts to: info
Jeffrey Kramer, President
Chondrosarcoma CS Foundation, Inc.