Sarcoma survivor and Rein in Sarcoma volunteer, Miranda Mead, has served for the past three years as a Peer Reviewer for the United States Department of Cancer Peer Review Panel. Miranda works with leading researchers, scientists, and oncologists from around the country to determine which cancer research proposals they fund.
This year, Miranda was asked by Dr. Donna Kimbark, Program Manager for the CDMRP, to serve as the speaker for at the Congressionally Directed Medical Research Programs (CDMRP) meeting on Friday, August 27. Dr. Kimbark has managed research funding programs for autism, multiple sclerosis, cancer, and bone marrow failure syndromes. Miranda opened with a Moment of Silence presentation to remind everyone of the importance of the work and the many lives affected.
The CDMRP, created in 1992 via a Congressional appropriation, fosters novel approaches to biomedical research to support the needs of the American public, the military, and Congress.
The CDMRP funds high impact, high risk and high gain projects that other agencies may not fund. All of the programs managed by the CDMRP share the common goal of advancing research, solutions that will lead to cures or improvements in patient care, or breakthrough technologies and resources. The CDMRP strives to transform healthcare through innovative and impactful research.
Thank you, Miranda, for being a part of this team and raising awareness about sarcoma cancers.
Rein in Sarcoma has been asked by KJT Group to promote a study they are conducting for people living with PEComa. They are looking for PEComa patients who may be willing to share their experiences. KJT Group will be conducting 60 minute virtual discussions with qualified patients. By sharing feedback with their research team, you can help improve treatment experiences and outcomes of others like you.
If you have been diagnosed with PEComa and would be willing to discuss your experiences with KJT, complete the survey. You will be asked a few questions about your background and experience. If you qualify for the study, there will be the opportunity to immediately schedule an interview.
Blake Hastings, RIS Board Director, Melissa Davies, Development Director, Dr. Brenda Wigel (UMN), Eric Lien, RIS Board Vice President, Janelle Calhoun, RIS Executive Director, and Tom Boardman, Development Committee Chair.
Rein in Sarcoma’s Board approved a research grant to the 2021 University of Minnesota at its January meeting. The number of grants were reduced based on buget decisions made in the spring of 2020. The University solicited requests for funding proposal from their researchers, blindly ranked them according to national standards, and recommended the proposal by Dr. Jaime Modiano, School of Veterinary Medicine to the RIS Research Committee.
We are pleased to fund this research, and look forward to a presentation on findings at the Sarcoma Research Symposium in 2023. Dr. Modiano has received Rein in Sarcoma research funding in prior grants. He shares with us:
“The data from our previous Rein in Sarcoma grants has helped us secure almost $6M in external grants for sarcoma research from the federal government (NIH and DOD), the state of Minnesota, and animal health foundations. These grants have been instrumental in helping us to complete work that is reported in numerous peer reviewed scientific articles as well as in lay articles. We are extremely proud of our return on investment from this meritorious program.”
Identifying and Characterizing the Cells that Create the Primary and Metastatic Sarcoma Niche | $50,000
Jaime Modiano, VMD, PhD
Jaime Modiano, VMD, PhD – Principle Investigator, Professor of Veterinary Medicine & Research
Aaron Sarver, PhD – Co-Investigator, UMN Medical School Assistant Professor Institute for Health Informatics
Sarcomas, or tumors of connective tissues, are challenging to treat because they tend to invade deep into tissues. This behavior makes it virtually impossible to remove all of the cancer even with very aggressive treatments. But some sarcomas pose even greater challenges because they spread to organs far from the primary tumor. In these tumors, the distant spreading, called metastasis, is the eventual cause of death for patients.
Aaron Sarver, PhD
Primary tumors of bone (osteosarcomas) and of blood vessels (angiosarcomas) are two highly metastatic sarcomas. The assumption with these cancers is that malignant cells have already spread by the time they are diagnosed. Because of this, patients receive extremely intensive therapies that can have severe side effects. Even so, more than half of patients with bone cancer and with blood vessel cancers die from their disease within about 10 and 3 years, respectively. For bone cancer, a 10-year survival might seem acceptable, were it not for the fact that this cancer mostly affects children, adolescents and young adults. It is well accepted that osteosarcomas and angiosarcomas spread through the blood circulation. This has led many investigators to search for tumor cells in the blood. We pioneered this approach for angiosarcoma almost two decades ago. But recent technological improvements provide opportunities to understand how and why the tumor are able to travel to distant sites. In addition, we are now able to find the chaperones that help them colonize new organs and create homes where they can thrive.
Osteosarcomas and angiosarcomas are quite rare in people. On the other hand, both are very common in dogs. We have shown that studying these diseases in dogs can help us better understand, diagnose, and potentially manage them in people. Here, we will use the same approach, studying tumor cells in the circulation of dogs with osteosarcoma and angiosarcoma. We will apply a technology called single cell sequencing. We have already developed methods to find and recover these cells from simple blood samples. Our goal is to determine how tumor cells and their chaperones alter their behavior to support the process of metastasis. The information we obtain from this project will support grant applications to the NIH, DOD, and other agencies. This line of work will help us to identify the cells that are responsible for sarcoma metastasis. In turn, the results will guide development of tests for early detection and to monitor disease progression. And finally, our efforts will provide insights to design new, safe and effective therapies to manage or prevent metastasis.
Charlie Gerk with wife and RIS volunteer, Danielle Gerk
Sarcoma survivor and RIS volunteer Charlie Gerk recently participated in the evaluation of research applications submitted to the Peer Reviewed Cancer Research Program (PRCRP) of the Congressionally Directed Medical Research Programs (CDMRP).
Charlie was nominated for participation in the program by Rein in Sarcoma. As a consumer reviewer, he was a full voting member, (along with prominent scientists) at meetings to help determine how the $110 million appropriated by Congress for Fiscal Year 2020 will be spent on cancer research.
About the PRCRP program
Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Charlie said that, “he was heartened to know so many dedicated people are working hard on cures for sarcoma”.
Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY09. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.
Scientists applying propose to support and promote high-impact research for cancer prevention, detection, treatment, quality of life and survivorship, and decreasing the burden of cancer on Service members, their families and the American public. The PRCRP fills important gaps not addressed by other funding agencies by supporting groundbreaking research while encouraging out-of-the-box thinking.
If you are interested in learning more about participating in the CDMRP’s Scientific Peer Review Panels, please contact Janelle Calhoun, Rein in Sarcoma’s Executive Director at (763) 205-1467 or execdirector@reininsarcoma.org.
Dr. Subramanian has been researching sarcomas since 2003. Although only few funding resources are available for sarcoma research compared to other cancers, Subramanian is drawn to the field. Sarcomas often strike children and young adults, who have so much life left to experience. Subramanian would like to discover ways to help these people. His own proposed title for this interview? “Let’s make sarcoma the disease of the past.”
Researchers look for tools that will allow doctors to better treat their patients. One recent example from Dr. Subramanian’s work was the discovery of a biomarker to distinguish between synovial sarcomas and malignant peripheral nerve sheath tumors. These two cancers can look very similar on imaging scans and under the microscope, but the best treatment for each type is very different.
Through your support, Rein in Sarcoma helps create the energy that sustains scientists like Dr. Subramanian. We thank you for this, and look forward to our future work together.
Dr. Randy Hurley is a hematologist/oncologist at Regions Hospital and Medical Director of HealthPartners’ Cancer Care Program. He has been involved with Rein in Sarcoma since its onset. He was Karen Wyckoff’s medical oncologist and attended the very first RIS event with her. He has since attended nearly every Party in the Park and maintains a close relationship with Pete and Sue Wyckoff.
Dr. Hurley graduated from the University of Wisconsin – Madison with an undergraduate degree in Pharmacy. Before and during medical school, he worked as a clinical pharmacist on the hematology-oncology ward at the University of Wisconsin. He completed his internal medicine residency and chief resident year at UW as well. During this time, he was involved in basic science research on extracellular matrix proteins.
In 1991, Dr. Hurley came to the Twin Cities, where he completed a hematology-oncology fellowship at the University of Minnesota and spent an additional year investigating hematopoietic stem cell adhesion to extracellular matrix proteins. He has been at Regions Hospital for over 20 years, the past nine of which have been spent as the Medical Director of HealthPartners’ Cancer Care Program. Dr. Hurley also holds a special interest in global health. He is board-certified in tropical medicine and has had an ongoing health care project in Tanzania for 15 years.
Early influences in his career drew Dr. Hurley towards a career in hematology-oncology. Working with cancer patients, he says, is both an art and a science. His career provides both inspiration and challenge on a daily basis. According to Dr. Hurley, because sarcomas are so rare, many primary care physicians may not be familiar with how they present. This poses a unique health care challenge.
Dr. Hurley is leading a RIS pilot project at Regions Hospital and HealthPartners to increase awareness of sarcoma cancers among medical providers with the goal of significantly reducing the amount of time between the onset of sarcoma symptoms and a proper diagnosis. As a part of this effort, he is heading up a RIS Task Force with Robert Gao, 2016-17 Sarcoma Scholar; Brittany E. Mathews, Senior EPIC Specialist for HealthPartners Oncology Service Line; Tim Michalski, CEO of Point of Care Decision Support, Jay Syverson, President of Point of Care, Decision Support; Christian Ogilvie, MD, RIS Board of Directors; Pete and Sue Wyckoff. The Task Force is seeking to develop an electronic medical record alert to help Primary Care Physicians to recognize and appropriately evaluate suspicious soft tissue masses at an early stage. This pilot project is a key part of the efforts of the RIS Hallie Anne Brown Educational Initiative.
