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.
Emily Greengard is a Pediatric Medical Oncologist at the Masonic Cancer Center and Assistant Professor at the University of Minnesota. Dr. Greengard has become involved with the RIS Medical Advisory Committee so central to the work of the Red Flags team. Passionate about treating her patients and having the opportunity to combine her practice with research in an academic environment, Dr. Greengard says “it’s nice to wake up every morning and think there’s nothing else you’d rather do.”
A two-part focus
Emily always knew she wanted to be “a doctor treating children,” but did not begin with the idea that her work would be with cancer patients. During her Pediatric Residency at Children’s Memorial Hospital and Northwestern University, she rotated through the children’s oncology practice. There, she “just fell in love with the patients.” She really appreciated the interpersonal relationships that can be developed with patients and their families. Dr. Greengard knew she wanted to practice in an academic environment, because she wanted some component of her career to be research. She is intrigued by the cancer disease process, with so many incredible research opportunities to advance the field and improve treatments.
Minnesota, and sarcoma
As she completed her Hematology/Oncology Fellowship at the Children’s Hospital of Philadelphia, Dr. Greengard became more and more fascinated by solid tumors, and then by sarcomas. As many of us know all too well, so much more progress is needed to improve outcomes and decrease the toxicity of treatments for this cancer. Dr. Greengard would like to contribute to this advancement. A lifetime resident of the Midwest except for her time in Philadelphia, Emily was happy to come to Minnesota. When she learned of the job opening, she felt it would be “perfect” for her and “a really great fit.” Offering an academic environment and the opportunity to practice with “grounded, supportive people” who have been successful in building their own practices, she expected it to be a great environment to start her career.
Working with the Red Flags
In 2012, Dr. Greengard joined with Rein in Sarcoma after spending time at the Sarcoma Corner during the annual Party in the Park event. Since that time, she has been active with the Medical Advisory Committee, a group of physicians from the University of Minnesota and Children’s Hospitals and Clinics of Minnesota. Together these doctors meet with members of the RIS team to develop materials and design programs to educate both lay people and professionals. Missed diagnosis and delayed or inadequate treatments are still all too common with sarcoma. The Red Flags team is working to improve these odds. When asked what is surprising about her work, Emily said: “How incredibly resilient people are.” No matter what their background, people rise to the occasion and find a way to get through the situation. She said she’s “always so amazed” at how families do.
And we thank Dr. Greengard for her energy, enthusiasm and fine contributions. We hope her practice will go well here, so she may stay in Minnesota for a long time.
Could you ever imagine sarcoma cancer, with a fairy tale ending? University of Minnesota Professor and cancer geneticist Dr. David Largaespada is working hard to make this happen. Through creative collaboration with others at the University and supported in part by RIS, Dr. Largaespada seeks both to better understand how cancer grows in people and to find new ways to stop it. He is drawn to sarcoma in part because it affects young people, and also because it is understudied. There are “more ideas than ever” being tried against the more common cancers. Dr. Largaespada would like to try these ideas against sarcoma cancer, as well. He expects to see “exciting new research in the near future.” To learn more about these possibilities, click here.
David Largaespada received his Ph.D. in Cellular and Molecular Biology at the University of Wisconsin-Madison in 1992, then did a postdoctoral fellowship at the National Cancer Institute, and finally joined the University of Minnesota in 1996. He holds a joint appointment as Professor in the Department of Genetics, Cell Biology and Development and in the Department of Pediatrics. His cancer research has received national attention, with publication in elite scientific journals and funding support from the National Institutes of Health. Several years ago, through a confluence of happenings, Dr. Largaespada began turning his talents towards sarcoma cancer.
You may have seen headlines about Largaespada’s unique model for identifying the genetic changes that could cause cancer, titled “Sleeping Beauty” because it uses awakened genetic material that was inactive for millennia. If you wish to learn more about this work, just type “largaespada sleeping beauty” into your favorite search engine. You could read for hours! What I will tell you about this work is that it led Dr. Largaespada, ultimately, to us.
When he began using the Sleeping Beauty model, sarcomas were among the first cancers Largaespada found. He looked around the University and saw that others were working with sarcomas. He has long had an interest in pediatric cancers, and felt that sarcomas were understudied. For all these reasons, Dr. Largaespada and his lab began to consider sarcoma. Currently, they have projects underway to apply the Sleeping Beauty model to both osteosarcoma and rhabdomyosarcoma. Through this model, they seek to identify those precise genetic changes in a normal bone or muscle cell that lead to the growth and spread of cancer. Identifying these changes may allow doctors to provide more effective cancer treatments and may provide scientists with new ideas for stopping cancer.
Dr. Largaespada conducts other sarcoma research, as well. One goal is to improve the speed and precision with which potential new treatments could be tested. Largaespada’s lab is working with vectors, which can be thought of as cargo trucks that carry certain types of genetic material into cells. His graduate student Brandon Moriarity is making “a really fancy cargo truck.” If they succeed, they may be able to match up the genetic changes in a particular tumor with the drugs that will offer the best chance for a response. This information can be really important in the clinic, to allow doctors to give the most effective treatments to their patients. The more scientists learn about cancer, the more they understand that each person’s tumor develops in a unique way. The genetic changes within the tumor may be more important than the body part where it first appeared. This may require scientists and pharmaceutical companies to have “a new way of thinking” about how to develop treatments. And perhaps, it could open new possibilities for sarcoma patients.
In 2010, Dr. Largaespada and his colleague Dr. Bridget Charboneau used their RIS grant to build upon literature suggesting that certain fibroblast growth factors may be important in causing rhabdomyosarcoma. When they blocked the action of these growth factors in the lab, the cancer cells did in fact slow down. When they also blocked an insulin growth factor, as well, the cancer cells slowed down even more. Although there are not drugs available right now to achieve all this blocking in people’s bodies, Dr. Largaespada is talking with Dr. Brenda Weigel about the possibilities.
This balance, between basic science research and clinical application, is important to Dr. Largaespada. He firmly believes we need more basic information about the process of cancer development. “On the other hand,” he said, “I’m impatient, like a lot of people.” Against the more common cancers, there are “more ideas than ever before” being tried in people. In case the answer to sarcoma is “already sitting right there,” Dr. Largaespada says: “Let’s try it.”
And trying it, he is. Every other week, Dr. Largaespada meets with a group including physicians Drs. Denis Clohisy, Keith Skubitz and Brenda Weigel and scientists Drs. Logan Spector and Subbaya Subramanian, all working together to find better treatments for sarcoma cancer. At the close of our interview Largaespada said, “I would like to have emphasized the fact that we’ve organized ourselves and created this sarcoma program.” There is a “community of labs” and a collaboration among people. “I expect lots of exciting research in the near future,” he said. And we are hopeful!
