Chondrosarcoma Center for Excellence

The Chondrosarcoma CS Foundation and the Sarcoma Oncology Research Center have created a unique "out of the box" collaborative partnership. In the effort to find effective interventions, vaccines and in pursuit of a cure for an ultra-rare bone cancer called Chondrosarcoma. A Non-profit patient advocacy group and a sarcoma cancer research center are joining forces to build the first global Chondrosarcoma Center for Excellence.

The Chondrosarcoma Center will have an existing physical location in Santa Monica, CA. It will consist of a core team of dedicated, credentialed, renown sarcoma experts to build a Center exclusively dedicated to diagnosing and treating Chondrosarcoma, a rare and deadly bone cancer.

The chondrosarcoma center will develop and focus on clinical research on effective treatments for aggressive and non-aggressive subtypes of chondrosarcoma. Specific interests will be a focused on aggressive chondrosarcoma sub-types in areas where there is little to no research including dedifferentiated and mesenchymal chondrosarcoma.

Chondrosarcoma CS Foundation, Inc.

The Chondrosarcoma CS Foundation is a public non-profit charitable (501c3) organization. Its mission is to create awareness and educate the public about Chondrosarcoma; support and advocate for patients and families that are suffering from this disease, and advocate to improve the treatment and care for patients suffering from this rare bone and soft tissue cancer. We advocate and promote positive changes including a viable treatment protocol, early detection, proper surveillance, more efficient and relevant information dedicated to Chondrosarcoma, and creating networking opportunities for sarcoma experts, patients and caregivers to specifically address Chondrosarcoma. Most importantly we advocate for more compassionate care, cutting through red-tape and promoting the patient’s right to receive treatment especially if it is potentially lifesaving.

Shayna Elise Kramer (the founder’s daughter) fought Grade 3 Conventional Chondrosarcoma and lost her battle to this rare bone and soft tissue cancer in November 2019 at the young age of 28. 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. We created the Chondrosarcoma Foundation to honor her legacy and incorporated on May 14, 2020, at the pinnacle of the pandemic.

Our current activities involve hosting the Virtual Dialogues, Chondrosarcoma Awareness Day on February 6 and distributing helpful guides on Chondrosarcoma to help patients and their families. On March 1, 2023, we launched the Chondrosarcoma Patient Registry through the NORD IAMRARE Registry Platform to enhance research and clinical trials, so far, we have 220 participants in the registry.

The Chondrosarcoma Foundation has created partnerships across the globe with scientists in basic research, sarcoma specialists that oversee clinical trials and with multidisciplinary medical experts. Specifically, the CS Foundation has created a collaborative partnership with the Sarcoma Oncology Research Center in Santa Monica, CA to build the first Center exclusively dedicated to improving the diagnosis and treatment of Chondrosarcoma.

Sarcoma Oncology Research Center 

The Sarcoma Oncology Research Center is a renowned cancer treatment and clinical research center led by a team of sarcoma specialists with over 30 years of experience in cancer care. As a premier sarcoma research center, patients have access to some of the newest and most promising experimental medications through their clinical trials. They are leaders in the field of oncology and are dedicated to developing innovative treatment solutions. They provide patients with the most effective, comprehensive treatment plans possible, working closely with each patient’s medical providers including primary care doctors, surgeons, pathologists, and radiologists.

The Sarcoma Oncology Center continuously participates in and leads drug trials for the treatment of all types and stages of sarcoma. Dr. Sant Chawla, a world renown Sarcoma expert and the center's medical director has conducted groundbreaking research to develop drugs to fight soft tissue sarcomas in addition to other cancers, and therapies to ameliorate side effects of standard chemotherapy, all of which have been approved by the FDA.

The Chondrosarcoma Foundation has created a partnership with the Sarcoma Oncology Research Center to build the first center exclusively dedicated to clinical research on diagnosing and treating Chondrosarcoma.

The chondrosarcoma center will offer innovative treatments for aggressive and non-aggressive subtypes of chondrosarcoma, with a specific interest in aggressive chondrosarcoma sub-types including dedifferentiated and mesenchymal chondrosarcoma.

Chondrosarcomas are malignant cartilaginous neoplasms with diverse morphological features and clinical behavior. This rare disease has an age-standardized annual prevalence rate of 0.2-0.5 per 100,000 people in the US and Europe

Chondrosarcoma is a heterogenous group of diseases and is the second most common type of malignant bone tumor.

The majority of chondrosarcomas are sporadic (primary), but they may also develop from malignant osteochondromas and enchondromas (secondary chondrosarcomas).

There are various subtypes of chondrosarcomas with different tumor characteristics, such as primary site, histological type, grade, and size. The most common subtype of primary chondrosarcoma is conventional chondrosarcoma accounting for 85-90% of all chondrosarcomas.

Conventional chondrosarcoma has reported a median overall survival of 38 months. In certain conditions, this subtype may progress into more severe, high-grade, and frequently metastatic chondrosarcoma that has a poor prognosis with 11 months of median survival time.

Treatment guidelines recommend the following options for chondrosarcoma patients:

* Surgery, the most utilized treatment preferred whenever the tumor is detected.

* Additional radiotherapy or systemic medication therapies, more advanced subtypes, such as dedifferentiated chondrosarcoma

* Clinical trial enrollment for patients with advanced chondrosarcoma subtypes

In general, chondrosarcoma is relatively resistant to conventional chemotherapy and radiation therapy. This may be related to the low mitotic fraction of cells and restricted drug penetration as a result of the abundant extracellular matrix and poor vascularity.

Overall survival for of chondrosarcoma is estimated between 14-17 months according to SEER data. At 5 years OS is about 28%, depending on grade and histologic subtype.

The prognosis for patients with a primary dedifferentiated chondrosarcoma is poor, with the 5-year survival rate reported to be between 7% and 24%. Mesenchymal chondrosarcoma shows a strong tendency toward late local and metastatic recurrences. Despite a potentially prolonged clinical course, the outcome for these patients ultimately appears to be poor, with reported 10-year survival rate in the range of 27% to 67%.

References:

1.Limaiem F, Davis DD, Sticco KL. Chondrosarcoma. [Updated 2023 Aug 14]. Available from: https://www.ncbi.nlm.nih.gov/books/NBK538132/

2.Thorkildsen J, Myklebust TÅ. The national incidence of chondrosarcoma of bone; a review. Acta Oncologica. 2023;62(2):110-7

3.Nazeri E, Gouran Savadkoohi M, Majidzadeh-A K, Esmaeili R. Chondrosarcoma: An overview of clinical behavior, molecular mechanisms mediated drug resistance and potential therapeutic targets. Crit Rev Oncol Hematol. 2018 Nov;131:102-109

4.Strauss SJ, Frezza AM, Abecassis N, Bajpai J, Bauer S, Biagini R, et al. Bone sarcomas: ESMO-EURACAN-GENTURIS-ERN PaedCan Clinical Practice Guideline for diagnosis, treatment and follow-up. Ann Oncol. 2021;32(12):1520-36.

5.Hua KC, Hu YC. Treatment method and prognostic factors of chondrosarcoma: based on Surveillance, Epidemiology, and End Results (SEER) database. Transl Cancer Res. 2020;9(7):4250-66.

6.National Comprehensive Cancer Network (NCCN). NCCN Clinical Practice Guidelines in Oncology: Bone Cancer 2023. Available from: https://www.nccn.org/professionals/physician_gls/pdf/bone_blocks.pdf

The Chondrosarcoma Center is designed to develop, establish and maintain safe and effective treatment options for all the sub-types (aggressive and non-aggressive) of Chondrosarcoma, with a specific focus in aggressive chondrosarcoma sub-types (which have had little to no research). The Chondrosarcoma Center will address unmet medical needs, develop promising pathways, and expand treatment options for this ultra rare cancer. The Center itself is being operated under the direction of Sant Chawla, M.D. a world renown sarcoma oncologist and we have dedicated the fifth floor of the existing facility to treating chondrosarcoma patients.

The goal of the center will be to set the gold standard for the treatment of this ultra rare cancer in centers globally. The center will establish a health caruencinge system that delivers evidence-based, patient-centered care that prioritizes prevention, reduces cancer morbidity and mortality, and improves the lives of chondrosarcoma survivors.

The mission of the center will be to meet rigorous standards for transdisciplinary, state-of-the-art clinical studies focused on developing new and better approaches to preventing, diagnosing, and treating Chondrosarcoma. It will collaborate with scientific leadership in laboratory and clinical research, and it will integrate training and education for biomedical researchers and health care professionals.

The Center will meet rigorous standards for transdisciplinary, state-of-the-art clinical studies focused on developing new and better approaches to preventing, diagnosing, and treating chondrosarcoma.

We will bring together a multi-disciplinary group of physicians, scientists, patient advocates, and donors to identify potential novel therapies in chondrosarcoma, in need of further clinical, scientific, and financial support.

Members will leverage their knowledge and resources to support basic and clinical research in the treatment of chondrosarcomas. 

In addition, the Chondrosarcoma Center will:

Expedite the development of innovative treatment strategies for chondrosarcoma.

Improve the diagnostic protocol and add new approaches including genomic sequencing.

Perpetuate a patient-centered focus on treatment with multidisciplinary care.

Provide research and clinical studies to address the prevention of recurrence/metastasis of chondrosarcoma.

Establish global collaborative initiatives through outreach and recruitment of basic science, translational and clinical research.

Create a multidisciplinary team of medical experts to participate in the care of individual chondrosarcoma patients.

Foster a learning environment, training, and opportunities for future medical professionals.

Cultivate a research infrastructure to advance scientific goals and foster cancer programs that draw together investigators from different disciplines.

Disseminate evidence-based findings to the sarcoma community and translating the programs and services to benefit Chondrosarcoma patients globally.

Chondrosarcoma is an ultra-rare bone cancer and as a result there is no cure or FDA approved medications or interventions. Because this bone cancer is rare there are very few research studies and clinical trials.

The Chondrosarcoma Foundation's Patient Registry, Natural History study (operated by the NORD IAMRARE platform) indicates the following:  

Demographic Characteristics: The average age of chondrosarcoma patients in the registry was ~51 years. Age ranges from 12-91 years. The literature implies the disease is more frequent among males. 

Clinical Characteristics: Patients need to be better informed and educated about their Chondrosarcoma subtype and have a more active role in making medical decisions. Only half of our study sample (49.7%) knew their chondrosarcoma subtype. Conventional chondrosarcoma was diagnosed in ~38% of patients with a known subtype (mostly grade 2), while dedifferentiated was the most common non-conventional subtype (~23%). 

Family Medical History: No definitive answer to family medical history. Only 1.8% of patients had a family history of chondrosarcoma. Family gene testing was performed in 5.3% of chondrosarcoma patients. Regarding other cancers in family history, 57.4% had maternal history, 43.2% had paternal history, and 16.6% had siblings with personal history.

Diagnostic Pathways: Improving diagnosis is a priority. Diagnosing chondrosarcoma is very difficult. About half of the study population (49.7%) was initially diagnosed with chondrosarcoma. Misdiagnosis was detected in 42.3% of patients. To detect chondrosarcoma, the most common diagnostic tools utilized were biopsy (69.2%) and MRI (67.5%). Gene testing was performed in 18.9% of patients. The most frequent symptoms occurred in chondrosarcoma patients were pain (64.5%), lump/swelling (29.6%), and restricted mobility (23.1%). 

Recurrence and Metastasis occur in the aggressive sub-types. No prevention or prophylactics have been studied. Once a patient has a recurrence or the bone cancer metastasizes, it results in a poor prognosis. Almost a third (32.5%) of the chondrosarcoma population had disease recurrence, and metastasis was noted in 29.0% of chondrosarcoma patients.

Treatment Patterns - More treatment options are needed. Surgeries were provided to 75.7% of chondrosarcoma patients. Surgical complications occurred in 17.2% of patients treated with such interventions. 

Treatment Patterns – Other Therapies: Options are few and positive outcomes are low. Radiation therapy was provided to 26.0% of patients, with a significantly higher proportion of conventional patients treated with proton radiation therapy. Chemotherapy and other medications were provided to 14.8% of chondrosarcoma patients each. Only 4.7% of patients were treated with immunotherapy and 4.7% of patients received ablation.

Time-to-Event Analysis: The average time from misdiagnosis to chondrosarcoma diagnosis was 355 days, while the average time from first symptoms onset to the chondrosarcoma diagnosis was 563 days, and the average time-to-treatment after diagnosis was 82 days.

Quality of Life: The quality of life of chondrosarcoma patients assessed via PROMIS Global Health Questionnaire was lower than in other cancer types. The average EQ-5D-3L score of chondrosarcoma patients was 0.65 points and was similar between conventional and non-conventional cohorts. There is a need for mental health services to improve Chondrosarcoma patient quality of life.

The primary objective of the Chondrosarcoma Center is to have a physical location to increase science and clinical trials for chondrosarcoma. The more research the better in the effort to find effective treatment, effective medicine, potential vaccines and cures. The second objective is to reach out globally to sarcoma experts to share results, knowledge and establish collaborative partnerships to find solutions. 

Listed below are current projects we are working on for the Chondrosarcoma Center in the effort to achieve our objectives listed above:

We are involved in studies using combination therapies to treat chondrosarcoma including initiating a Phase 1 Preclinical Trial: Using DeltaRex-G as an Adjunct to treat Advance Metastasis in Mesenchymal Chondrosarcoma Patients: Erlinda Gordon, M.D.

We are also involved in stem cell research and have established a Concept Paper to initiate a Preclinical Trial (Proof of Concept): Using TPA: Tyr Peptide Analogue as an Adjunct to treat Advance Metastasis in Dedifferentiated Chondrosarcoma Patients: Karina Galoian, Ph.D.

We have also established a Concept Paper to initiate a Preclinical Trial (Proof of Concept): Targeting B7-H3 via cellular therapies: Dr. Joseph Schwab at Cedars-Sinai in conjunction with the Chondrosarcoma Center

We have established a collaboration with Alice Soragni, M.D.an orthopedic oncologist with a lab at UCLA, who has studied patient organoid models and addressing chondrosarcoma.

We started a study of pulsed electrical field (PEF) ablation of tumors resistant to systemic other local therapies and are including Chondrosarcoma patients.

We are forming a global tumor board of sarcoma experts who treat chondrosarcoma to provide expert advice in the treatment of chondrosarcomas to support medical professionals and patients from around the world, where expertise may not be accessible. 

We are partnering with industry partners including Boston Gene state-of-the-art molecular testing laboratory to performs next generation genomic sequencing technologies, including whole exome and whole transcriptome sequencing, multiplex immunofluorescence imaging, flow cytometry and proteomics. 

We are partnering with AI groups with an interest in rare diseases in oncology for drug discovery, and to develop tools for radiodiagnosis.

The Chondrosarcoma Center will have a physical space for with other potential sites to boost access to patients across the country and internationally. 

The Chondrosarcoma Center is a freestanding cancer center dedicated to the research of Chondrosarcoma and is designed to play a pivotal role in advancing Chondrosarcoma cancer research, diagnosis, and treatment and improving patient treatment outcomes. Because it is freestanding it has no barriers or institutional roadblocks that can interfere with making progress. It has the capability to address the following:

• Providing care and resources to any patient diagnosed with Chondrosarcoma regardless of their sub-type, grade, or stage of progression.
• Expediting the development of innovative treatment strategies for Chondrosarcoma.
• Perpetuating a patient-centered focus on treatment with multidisciplinary care.
• Advancing early detection and diagnosis of Chondrosarcoma.
• Attention to the prevention of recurrence/metastasis of Chondrosarcoma.
• Establishing global collaborative initiatives through outreach and recruitment of basic science, translational and clinical research.
• Creating a multidisciplinary team of medical experts to participate in the care of individual Chondrosarcoma patients.
• Fostering a learning environment, training, and opportunities for future medical professionals.
• Cultivating a research infrastructure to advance scientific goals and foster cancer programs that draw together investigators from different disciplines.
• Disseminating evidence-based findings to the sarcoma community and translating the programs and services to benefit Chondrosarcoma patients globally.

The efforts of the Chondrosarcoma Center are just beginning and while we are making progress, we seek funding to support the development of the Chondrosarcoma Center and obtain the resources to make it functional to achieve its mission and goals.

The Sarcoma Oncology Research Center is donating their fifth floor for the Chondrosarcoma Center however, we need medical equipment and supplies to conduct the research, clinical trials, diagnostic procedures and treatment of the center.

The Sarcoma Oncology Research Center is willing to dedicate staff to run the Chondrosarcoma Center, but we need funding for computers, software and the infrastructure to run the center and obtain the necessary medical documents/imaging/slides for the center's day to day operation.

The Chondrosarcoma Center is working on obtaining funding for proposed pre-clinical studies and clinical trials dedicated to improving the diagnosis and treatment of Chondrosarcoma with a focus on the aggressive sub-types including Conventional Chondrosarcoma, Grade 3, Dedifferentiated and Mesenchymal Chondrosarcoma. We need resources for the infrastructure to implement these studies.

We also need the infrastructure to bring together a multi-disciplinary team (medical oncologists, radiation oncologists, surgical/orthopedic oncologists, pathologists, and basic scientists) to form a scientific advisory committee to identify promising pre-clinical and clinical therapies.

We need to perpetuate opportunities for on-going dialogue to improve the diagnosis and treatment of Chondrosarcoma again with a focus on the aggressive sub-types including Conventional Chondrosarcoma, Grade 3, Dedifferentiated and Mesenchymal Chondrosarcoma.

Funding will help us establish a chondrosarcoma tumor board to improve the diagnosis and treatment of chondrosarcoma patients using the medical tools to do the following: 

• To develop a treatment planning process in which a multidisciplinary group of medical practitioners who have experience treating chondrosarcoma.
• To have chondrosarcoma cases presented virtually monthly to review and discuss treatment options for chondrosarcoma cases brought to the board by oncologists across the globe.
• Tools to facilitate the tumor board review to decide as a group what treatment options including what clinical trials would be the most beneficial for patients suffering from conventional and non-conventional chondrosarcoma.
• To organize, schedule and provide the administrative support for the meetings that will involve specialists from many areas of health care, including medical oncologists, radiation oncologists, orthopedic surgeons, pathologists, immunologists, genetics experts, nurses, physical therapists, social workers, patient survivors and caregivers.
• Medical Information on the patients to be presented will be managed, and organized by the Sarcoma Oncology Center / Chondrosarcoma Center in Santa Monica, CA.
• To ensure security of the medical information will be presented by the chondrosarcoma patient’s oncologist and will be reviewed prior to the monthly meeting. The information will include the following:
  • Brief Overview of Patient
  • Pathology Report including Diagnosis, Grade and Stage
  • Lab Reports
  • Histology Review
  • Radiology Review, CT and /or MRI scans
  • Genomic Sequence Tests

The Chondrosarcoma Foundation and the Sarcoma Oncology Research Center have established an effective alliance to create the Chondrosarcoma Center for Excellence and have established a dedicated medical team with the expertise in diagnosing and treating chondrosarcoma as well as the capability to advance the research and improve the diagnosis and care of patients with chondrosarcoma.

Staff at the Chondrosarcoma Center for Excellence who live in close proximity to the center include:

Medical Director: Sant Chawla, M.D. has conducted groundbreaking research to develop drugs to fight soft tissue sarcomas in addition to other cancers, and therapies to ameliorate side effects of standard chemotherapy, all of which have been approved by the FDA. Sant Chawla, M.D. will lead the medical team in overseeing the clinical studies taking place at the center.

Managing Director: Neal S. Chawla, M.D. is a Sarcoma Oncologist at the Sarcoma Oncology Center and is committed to clinical and translational Sarcoma research, with a particular interest in Chondrosarcoma. He joined the City of Hope Comprehensive Cancer Center as a post-doctoral research fellow in the Hematology/Oncology Fellowship program at City of Hope. Dr. Chawla will manage the day-to-day operations of the center.

Clinical Director: Erlinda Gordon, M.D.; is a practicing medical oncologist and serves as Director of Gene and Cell Therapy/Immunotherapy at the Sarcoma Oncology Research Center. Dr. Gordon is internationally known in the field of gene therapy, specifically, for the invention and clinical development of DeltaRex-G, the first and, so far, the only tumor/disease-targeted genetic medicine that has gained Accelerated Approval for chemotherapy resistant solid malignancies. Dr. Gordon will be the Principal Investigator of clinical trials at the center.

Science Director: Joseph H. Schwab, M.D., MS, is the professor of orthopedic surgery and neurosurgery and the Director of the Center for Surgical, Artificial Intelligence for Cedars Sinai Hospital in Los Angeles, CA. Dr. Schwab combines his spine surgery and oncology training with his research interests in tumors and degenerative conditions of the spine. Dr. Schwab will address the research he conducts using Car-T therapy to treat high grade chondrosarcoma. Dr. Schwab is the former Chief of Orthopaedic Spine Surgery, Director of Spine Oncology and Co-Director of the Stephen L. Harris Chordoma Center in Boston, MA. He is also the former Associate Professor of Orthopaedic Surgery at Harvard Medical School. Dr. Schwab will work from his laboratory at the City of Hope to address research initiatives related to chondrosarcoma in collaboration with the Chondrosarcoma Center.

President: Jeffrey Kramer, M.S. lives in the Washington, DC metro area. He created the Chondrosarcoma Foundation to honor his daughter Shayna Kramer’s legacy. Shayna lost her battle in November 2019 and Jeffrey promised her he would create the Foundation. Mr. Kramer combines his 24 years of experience in the health care education, communication, with his experience in broadcasting to produce films. For the past 24 years, Jeffrey has been a certified Emergency Medical Technician and a Volunteer Firefighter for the Prince George’s County Fire Department.  

The mission of the center will be to meet rigorous standards for transdisciplinary, state-of-the-art clinical studies focused on developing new and better approaches to preventing, diagnosing, and treating Chondrosarcoma. In addition, the center will deliver cutting-edge treatments, address unmet needs, and create promising pathways towards care. It will collaborate with scientific leadership in laboratory and clinical research, and it will integrate training and education for biomedical researchers and health care professionals.

The center as a freestanding institution can be exclusively dedicated to the research of Chondrosarcoma and will play a pivotal role in advancing Chondrosarcoma cancer research, diagnosis and treatment and improving patient outcomes by:

• Providing care and resources to any patient diagnosed with Chondrosarcoma regardless of their sub-type, grade, or stage of progression.
• Improving the diagnostic protocol of chondrosarcoma including the addition of new diagnostic techniques such as genomic sequencing.
• Expediting the development of innovative treatment interventions for Chondrosarcoma including the use of combination therapies.
• Perpetuating a patient-centered focus on treatment with multidisciplinary care.
• Advancing early detection and diagnosis of Chondrosarcoma.
• Attention to the prevention of recurrence/metastasis of Chondrosarcoma.
• Establishing global collaborative initiatives through outreach and recruitment of basic science, translational and clinical research.
• Creating a multidisciplinary team of medical experts to participate in the care of individual Chondrosarcoma patients.
• Fostering a learning environment, training, and opportunities for future medical professionals.
• Cultivating a research infrastructure to advance scientific goals and foster cancer programs that draw together investigators from different disciplines.
• Disseminating evidence-based findings to the sarcoma community and translating the programs and services to benefit Chondrosarcoma patients globally.

The five-year plan of the chondrosarcoma center will be to set the gold standard for the treatment of this ultra rare cancer in centers globally. The center will establish a health care system that delivers evidence-based, patient-centered care that prioritizes prevention, reduces cancer morbidity and mortality, and improves the lives of cancer survivors.

The first set of goals to increase research and clinical trials on chondrosarcoma will be the primary responsibility of the team at the Chondrosarcoma Center.

There are currently only two clinical trials that exist that focus on drugs for low grade conventional chondrosarcoma. The center is in the process of creating more clinical trials to improve the diagnosis and treatment of chondrosarcoma.

We are in the process of developing clinical trials to address:

* Aggressive sub-types of Chondrosarcomas that have little to no research and no approved or effective care beyond surgical procedures. This includes sub-types with a poor prognosis including Dedifferentiated and Mesenchymal Chondrosarcoma.

* Advance early detection and diagnosis of Chondrosarcoma by improving the current diagnostic protocol and including genomic sequencing to identify biomarkers for effective care.

* Attention to the prevention of recurrence/metastasis of Chondrosarcoma by exploring ways to prevent chondrosarcoma recurrence and/or metastasis through research and clinical trial discoveries using stem cell research, combination therapies, genomic sequence "biomarker" studies and other innovative approaches.

* Adding ancillary services to patients' treatment protocol including mental health services to improve chondrosarcoma survivors, families and caregivers' quality of life.

The second set of goals will be the primary responsibility of the Chondrosarcoma Foundation in partnership with the team of the Chondrosarcoma Center.

* Establishing global collaborative initiatives through outreach and recruitment of basic science, translational and clinical research. 

*Creating a multidisciplinary team of medical experts to participate in the care of individual Chondrosarcoma patients.

* Fostering a learning environment, training, and opportunities for future medical professionals and cultivating a research infrastructure to advance scientific goals and foster cancer programs that draw together investigators from different disciplines.

* Disseminating evidence-based findings to the sarcoma community and translating the programs and services to benefit Chondrosarcoma patients globally.

The core group of dedicated staff include:

Jefrey Kramer, President Chondrosarcoma CS Foundation is responsible for fund-raising, recruitment of multidisciplinary medical professionals, survivors, caregivers, sharing results and promoting the existence of the Chondrosarcoma Center.

Medical Director: Sant Chawla, M.D. lead the medical team in overseeing the clinical studies taking place at the center.

Managing Director: Neal S. Chawla, M.D. manages day-to-day operations of the center.

Clinical Director: Erlinda Gordon, M.D.; Principal Investigator of clinical trials at the center.

Science Director: Joseph H. Schwab, M.D., MS, will address research initiatives related to chondrosarcoma in collaboration with the Chondrosarcoma Center.

Short answer is eight months. In November 2023 at the CTOS conference in Dublin; Sant Chawla, M.D. and Jeff Kramer met to discuss the possibility to create the Chondrosarcoma Center. What started as an idea in a short time is becoming a reality. Endorsed by the CS Foundation board and sarcoma oncologists, and scientists have joined us in the effort. 

Since November a meeting with the initial team was held in person in Los Angeles in January 2024 and several Zoom meetings have brought us to the stage where we are in the process of creating and dedicating the center.

The main objective is to find solutions to effectively diagnose and treat Chondrosarcoma. Our mission is to bring together a multi-disciplinary group of physicians, scientists, patient advocates, and donors to identify potential novel therapies in chondrosarcoma, in need of further clinical, scientific, and financial support and leverage knowledge and resources to support basic and clinical research in the diagnosis and treatment of chondrosarcomas. That will involve the inclusion of input from diverse multidisciplinary stakeholders including different cultures globally in the design process.

We will also promote this opportunity to a diverse array of multi-disciplinary, culturally diverse professionals, with a dedicated focus on underserved demographics and communities. 

To establish global collaborative initiatives through outreach, (without discrimination) and recruitment of basic science, translational and clinical research. Our outreach efforts will include multi-disciplinary medical professionals, chondrosarcoma survivors and caregivers of patients who are surviving or have lost their battle to this ultra-rare cancer.

Our goal also includes fostering a learning environment, training, and opportunities for future medical professionals. Cultivating a research infrastructure to advance scientific goals and foster cancer programs that draw together investigators from different disciplines.

Finally, we intend to disseminate evidence-based findings to the sarcoma community and translating the programs and services to benefit Chondrosarcoma patients globally.

We have a culturally diverse core group of leaders. Sant Chawla, M.D. and Neil Chawla, M.D. are from India. Erlinda Gordon, M.D. is from the Philippines, and we have other members representative of cultures around the globe. 

The unique combined partnership between the Chondrosarcoma CS Foundation and the Sarcoma Oncology Research Center will create the Chondrosarcoma Center for Excellence and achieve sustainability by enabling the combined effort to support the Center financially in innovative ways. The Chondrosarcoma CS Foundation will serve as the non-profit charitable 501c3 organization for the Center and will provide fund raising activities to build the infrastructure for the center. The Sarcoma Oncology Research Center will operate as a cancer center except that it will never turn away any patient with chondrosarcoma that is seeking care.

The Chondrosarcoma CS Foundation will maintain Its mission is to create awareness and educate the public about Chondrosarcoma; support and advocate for patients and families that are suffering from this disease, and advocate to improve the treatment and care for patients suffering from this rare bone and soft tissue cancer. It will however expand its mission by supporting and contributing to the Chondrosarcoma Center for Excellence. 

The Chondrosarcoma Foundation will continue to partnerships across the globe with scientists in basic research, sarcoma specialists that oversee clinical trials and with multidisciplinary medical experts but now with a focus to build the first Center exclusively dedicated to diagnosing and treating Chondrosarcoma.

The Sarcoma Oncology Research Center will continue to be a renowned cancer treatment and clinical research center led by a team of sarcoma specialists with over 30 years of experience in cancer care. As a premier sarcoma research center, chondrosarcoma patients have access to some of the newest and most promising experimental medications through their clinical trials. They are leaders in the field of oncology and are dedicated to developing innovative treatment solutions. They provide patients with the most effective, comprehensive treatment plans possible, working closely with each patient’s medical providers including primary care doctors, surgeons, pathologists, and radiologists.

The Sarcoma Oncology Center will continue to participate and leads drug trials for the treatment of all subtypes and stages of chondrosarcoma. This is an unorthodox unique business model fora solution to diagnosing and treating an ultra-rare bone cancer that converts inputs into outcomes; and provides both social measurable impact and economic value.

As mentioned above, the unique combined fund-raising efforts of the Chondrosarcoma CS Foundation and the Sarcoma Oncology Research Center will build and sustain the Chondrosarcoma Center for Excellence. 

The Chondrosarcoma CS Foundation will serve as the non-profit charitable 501c3 organization for the Center.  The foundation has had success in hosting and supporting fund-raising activities including 5k Walk / Runs (last year brining in almost $3,000); special events including a Pickleball tournament and Lifecycle bike event (adding $3,500). Corporate grants from CSX Transportation and Above the Clouds Film Company (raising $12,000) and donations from Community Grants and Trust Fund Charities totaling $20,000.

We have long term relationships with stakeholder donors including pharmaceutical companies including Servier, Inhibrx and GSK annually providing $55,000 in Charitable grants.

In addition, we promote February 6 (Shayna's heavenly birthday) as Chondrosarcoma Awareness Day and last year raised over $25,000 in donations. 

Some of our fund-raising ideas for a formal Dedication of the Chondrosarcoma Center for Excellence include an Annual Gala with A-list entertainment and inspirational presentations. A conference of medical professionals, survivors and caregivers on chondrosarcoma. And donation drives for any specific needs of the Chondrosarcoma Center.

The Sarcoma Oncology Research Center will continue to operate as a cancer center except that it will not turn away any patient with chondrosarcoma that is seeking care. It has provided Pro-bono medical services to chondrosarcoma patients in Nigeria, Hungary and currently Uzbekistan. 

The Sarcoma Oncology Research Center is currently conducting a Phase 2 Clinical Trial for Inhibrx for INBRX-109 (death cell receptor) for patients with Conventional Chondrosarcoma and is about to conduct a Phase 3 clinical trial with Servier Pharmaceuticals on Ivosidenib (an IDH1 inhibitor) for patients with conventional chondrosarcoma.

In addition, the Sarcoma Oncology Research Center is conducting a study of pulsed electrical field (PEF) ablation of tumors resistant to systemic other local therapies and is including chondrosarcoma patients.

The Sarcoma Oncology Research Center is also working on raising funding for the following clinical studies:

Erlinda Gordon, M.D. has written a concept paper and pursuing a grant or a license to conduct a Phase 1 Preclinical Trial: Using DeltaRex-G as an Adjunct. She intends to expand her current clinical trial to include patients with Advanced Metastasis in Mesenchymal Chondrosarcoma Patients. 

Karina Galoian, Ph.D. a researcher at the University of Miami wants to partner with the Chondrosarcoma Center. She has written a concept paper and is looking for a grant or license to conduct a Preclinical Trial (Proof of Concept): Using TPA: Tyr Peptide Analogue as an Adjunct to treat Advance Metastasis in Dedifferentiated Chondrosarcoma Patients. 

Joseph Schwab, M.D. is seeking IND funding for his study targeting B7-H3 via cellular therapies and wants to initiate a clinical trial at the Chondrosarcoma Center.

As mentioned above, the activities of the Chondrosarcoma Foundation and the Sarcoma Oncology Research Center, and the unique combined partnership will pull together talent and resources to produce a myriad of fund-raising opportunities designed to build and sustain the Chondrosarcoma Center for Excellence.