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.
Medical research is like a 1,000-piece puzzle. Researchers craft studies to discover new pieces, advances in other fields contribute additional information, and organizations like Rein in Sarcoma provide support to fuel the work. The sarcoma puzzle is not yet complete, but there are exceptional people at the table working towards improved treatments and patient outcomes.
Brandon Diessner, Ph.D. candidate at the University of Minnesota, is one of those people—and he’s no stranger to complex problems. As an epidemiologist and experienced statistician, he digs into giant batches of data to learn why diseases occur in different groups of people. And, fortunately for us, he’s putting his skills to work for sarcoma, alongside his mentor of six years, Dr. Logan Spector.
Brandon may be early in his career (he will receive his Ph.D. at the end of this month), but he has already amassed an impressive record of sarcoma research. His latest work—featured in the August issue of the Journal of the American Medical Association—investigates why some patients already have metastatic disease by the time they are first diagnosed with sarcoma. The team hypothesized that delays in diagnosis could be at fault, but there might be other factors involved, such as age, race/ethnicity, or genetics.
Brandon Diessner’s article
The team analyzed cancer and census data from more than 47,000 soft-tissue and bone sarcoma cases. While overall socioeconomic status did not seem to have an impact, they found that patients with either no insurance or Medicaid insurance were more likely to have metastatic disease by the time they were diagnosed with soft-tissue sarcoma—suggesting that insurance challenges may create delays in healthcare that give some sarcoma sub-types more time to spread.
The study also revealed that Black adults were more likely to have metastatic disease when first diagnosed with leiomyosarcoma. This is consistent with previous DNA studies that suggest genetic factors likely influence how aggressively some sarcoma subtypes progress. Brandon and colleagues plan to follow this path in their future research, with the goal of better understanding what leads to the development and spread of sarcoma at a genetic level.
In addition to designing his own studies to further the field’s body of knowledge, Brandon is frequently recruited for his skills as a statistician. He recently analyzed data for a HealthPartners and University of Minnesota study that evaluated a new sarcoma alert system for primary care physicians. The alert is triggered when a physician encounters a soft-tissue mass that is deep, large / enlarging, or painful, and recommends an MRI to check for possible sarcomas. And it works: nearly 20 MRIs were prompted as a result of the alert, and four malignant or potentially malignant tumors were found. Because many physicians are unfamiliar with sarcoma cancer (encountering perhaps one or two cases throughout their career), this alert mechanism could help detect the rare disease sooner and save lives. Researchers envision implementing the alert system in medical record systems across Minnesota, and, eventually, the nation.
Researchers like Brandon are discovering key pieces to the sarcoma puzzle, and Rein in Sarcoma is grateful that young, talented minds are focusing on this rare disease. Our community continues to come together to support sarcoma research and work towards better detection, improved and expanded treatment options, and a cure.
Brandon Diessner will receive his Ph.D. in Epidemiology at the end of this month and will continue exploring how genetics predispose people to develop osteosarcoma and Ewing sarcoma at the University of Minnesota. He lives in Shoreview with his wife, MacKenzie, and their first child, a son who they welcomed in July. When he’s not analyzing copious amounts of data, you might find him hiking with his dog and family or exploring new restaurants or breweries in the Twin Cities.
Nikki L. Miller is a freelance writer based in Minneapolis.
It can be really hard to love sarcoma cells when you’re a cancer patient. Yet your future may depend on scientists finding them fascinating. Meet University of Minnesota Professor and tumor biologist Amy Skubitz, who finds cancer cells to be the most interesting in the human body. We can embrace this interest, as she has focused her talents on discovering better ways for doctors to find, predict and stop cancer cells. Often working in collaboration with others at the University, including her husband oncologist Keith Skubitz, Dr. Amy Skubitz has received more than one RIS grant award. What is it about cancer cells? What does a tumor biologist really do? And how can your tumor cells be used to improve cancer treatments?
Amy Skubitz’ parents were scientists. When it came time for her to choose a college major, she combined their backgrounds in biology and chemistry, taking a major in biochemistry. What she really loved was working in the lab, with hands-on and off-beat procedures, some so delicate that a single human fingerprint could change the results. She loved the quantitative data analysis, too, that followed this work. So she pursued a PhD in Pharmacology and Experimental Therapeutics from the Johns Hopkins University and completed postdoctoral work in Laboratory Medicine and Pathology at the University of Minnesota. Now a Professor in that department, Dr. Skubitz spends her days preparing grant funding applications, conducting scientific research, writing scientific papers, and mentoring graduate and undergraduate students who work in the labs.
Amy Skubitz seeks excitement in her work. She was drawn to the idea of “discovering something that nobody else knew.” The field continues to change dramatically, as new technology allows new opportunities and much quicker results. Information that used to take weeks to get can now be delivered overnight. The same aspects that make tumor cells dangerous in the body make them fascinating in the lab. Normal cells “don’t do much.” Put them in a lab environment, and they will multiply a couple of times and then just sit there. Cancer cells “grow, multiply, spread out, and move.” They reach out and try to grab things. Through special time-lapse photography, scientists can watch dramatic shifts that happen overnight.
The trick for helping patients is to identify better ways for doctors to identify cancer, predict how it will behave in the body, and stop it from growing. During her career, Dr. Skubitz has pursued many different paths to these results. In the beginning, she wanted to do cancer research. Of all diseases, this is the one that seemed like such a big problem. “So many people have had cancer, or know someone who has had it,” she said. But her first work in graduate school was with parasites, after she became involved with a Johns Hopkins lab that was trying to find targets for vaccines that could prevent worm infections that plague people in foreign countries. When she came to the University of Minnesota in 1984, Dr. Skubitz was able to find work using similar technologies to evaluate potential new treatments for cancer. She has been working with cancer cells ever since.
Amy Skubitz came to RIS through her leadership of the Cancer Center Tissue Procurement Facility, which began in about 1995. Before then, after pathologists had finished testing the tumors that were removed from patients through biopsy or surgery, the extra tissue was thrown away. At the same time, researchers were having a hard time finding enough tissue samples to do their work. Dr. Skubitz led the Facility effort, which asked patients to agree that their leftover tumor tissue could be used by scientists, then to have that tissue cataloged and stored for research use. Eventually, University researchers had access to information about all the different genes that were contained in over fifteen hundred tumors. This allowed them to look for profiles or signatures that might be important to cancer growth or movement in the body. If important genes could be identified, this could lead to tests that would help doctors identify tumors or predict their behavior. It also could lead to treatments that block tumor growth or spread in the body. Amy was interested in the opportunities for ovarian cancer, which had been a focus of her work for many years.
Her husband, oncologist Keith Skubitz, was interested in the possibilities for sarcoma. One person’s sarcoma tumor can have many different-looking areas, so it can be hard for a pathologist to tell if a tumor really is sarcoma, and which kind it is, based only on the small tissue samples taken before surgery. Getting the diagnosis right is really important, however, so patients without sarcoma are not exposed to toxic treatments but patients with sarcoma get the best available treatments for their cancer type. Many sarcoma tumors are really aggressive, but some are not. Again, the best treatment could depend on knowing which is which. And, as you may understand all too well, there is a serious need for better sarcoma treatments to be developed.
Ultimately, Drs. Amy and Keith Skubitz ended up working together. They stayed up late many nights “in a locked room” at home, after their kids went to bed, reading lists of genes to each other and deciding which may be important. With their first RIS grant, they took this work one step further, testing to see if the genes they had thought were important for an aggressive form of fibromatosis actually appeared to play a role in tumor growth in the body. With fine assistance from pathologist Dr. Carlos Manivel, they were able to confirm that the genes they had identified did seem important. This work continues, and they hope to apply a new technology that will allow much smaller tumor samples to be evaluated, in a much quicker and cost-effective way.
In 2010, the RIS grant was for work related to the prevailing scientific theory that a small and constant percentage of “cancer stem cells” within a tumor are the ones that actually make cancers dangerous to people, because they drive the spread of tumors throughout the body and are not killed by commonly used chemotherapies. This work also was designed to test chemotherapies against these cancer stem cells, to see if any of the drugs had an effect on the cells. This work also continues.
It was difficult to end my conversation with Amy Skubitz. She speaks quickly and with great enthusiasm, conveying incredible depth and complexity in an accessible way. I expect she could talk about science for hours, nonstop. In many ways, she has been talking about science for a lifetime. To learn more, you may find her biography and select publications, including many publications related to her work with sarcoma, through the Laboratory Medicine and Pathology website.
