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. 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.
I once heard University of Minnesota Associate Professor and medical oncologist Brenda Weigel referred to as “the hope doctor.” It is easy to see why this could be so. Dr. Weigel radiates a sincere and vital hope, fueled by her research seeking better cancer treatments but grounded in her experience treating cancer patients. “Far too often,” she has faced situations where there was “nothing else to do” for patients. But she also has seen recoveries in recent years that would have been unimaginable before.
Even more exciting developments are on the horizon. Dr. Weigel would like to recognize the Wyckoff family and all those who have helped Rein in Sarcoma, for the huge impact the group has had in moving the University to develop what is now becoming one of the premiere sarcoma programs in the country.
The Accidental Oncologist
It may surprise you to discover that Dr. Weigel “was not one of those people who knew from the beginning” that she wanted to be a doctor. She was “always interested in lots of things,” and chose to major in science in college. While obtaining her Masters degree in nutritional biochemistry, she worked at the Hospital for Sick Children in Toronto, Canada. In the late 1980s, as she pursued her graduate studies, a colleague suggested that she might try medical school instead. Her response? “Are you kidding me? I’d never get in!” But she did apply, and she did get in. Then she turned the offer down, because she wasn’t sure she really wanted to go. Dr. Weigel got married, and some time passed, and she began to think: “I may have made a big mistake.”
So Dr. Weigel applied again to medical school, and again she was accepted. She said to her husband, “I probably should do this!” Fortunately, then as now, her husband was wonderfully supportive. And so she went.
Dr. Weigel had loved working with children in the Toronto hospital, but she spent most of her time in medical school trying to convince herself that she would do something else. She was interested in “very intense fields” of medicine and had a strong interest in continuing to do cutting-edge scientific research. After she completed her internship, she realized that she had the most fun during her rotation through pediatrics. So she conducted her residency in pediatrics at the University of Western Ontario. She intended to go into critical care, practicing intensive care medicine.
Then, after a few months in an oncology rotation, “this light bulb turned on.” Dr. Weigel realized that pediatric oncology would allow her to marry her “love of research” with intense medicine, and also would allow her to develop “such incredible relationships with families,” which was something that critical care medicine did not offer.
In this way, an oncologist was born.
Onward, to Minnesota and Sarcoma
Very few options for oncology training were available in Canada, and someone suggested to Dr. Weigel that the University of Minnesota offered what she was seeking. So she and her husband traveled here early one November, when snow already was falling. Contrary to popular belief, Toronto is not quite so freezing as our great state. “The lake effect!”
After her interview here, Dr. Weigel was offered an oncology fellowship with full research funding for three to four years. This research guarantee sealed the deal, and she came in the mid-1990s. Her experience was “really really fantastic.”
Dr. Weigel landed in the lab of Dr. Bruce Blazar, a bone marrow transplant doctor who both worked to control immune system response after transplant and also to develop new ways to use the immune system to treat cancer. Dr. Weigel was drawn to solid tumors and particularly to sarcoma. At that time, the scientific literature was just “this black hole” with respect to sarcomas. Work simply was not being done, in this area “so desperately in need of research.”
So Dr. Weigel expressed her interest, and Dr. Blazar supported her completely. But she needed to blaze her own trail. She could use the lab resources, but she needed to “literally start from scratch” and figure out how to get it done. One has the sense that this challenge itself was a major draw. After weeks combing the literature, Dr. Weigel found a whole series of papers from the East Coast indicating that a cell line had been developed that could be used for research into rhabdomyosarcoma. She contacted Dr. Robert Evans, the retired man behind this work, and obtained his permission to carry on. He was “just incredibly gracious” and sent her the cells, happy to know that someone would use his work. And use his work, she and her University colleagues did.
When asked about what she is doing now, Dr. Weigel said that all her years in basic science research were “a gateway to bring new therapies to children and adults with cancer.” Now, most of her time is spent in early phase clinical trials and translational research, seeking to move new drug therapies out to people.
In talking about the course of her life, Dr. Weigel said she thought it important to “make the most out of whatever opportunity is put in front of you,” and to understand that “you never know what that opportunity will be.” The understanding she has gained through her work with patients and families has been important in shaping her scientific research. We are thankful that Dr. Weigel has poured so much of herself into both research and treatment, fulfilling a dual role she finds it “so crystal clear” must be played.
Hope on the Horizon
After so many years in the dark ages, it is astonishing to learn that sarcomas finally may be emerging into lighter times. Ten years ago, Dr. Weigel wrote a clinical trial design for young people with rhabdomyosarcoma. There were no new drugs available then; just a plan to deliver old drugs in new ways. In the first 18 months after the treatments were delivered, these changes allowed people to live longer overall and extended the length of time that they lived without return of their cancer. Even if the improvements fade away with more time, this is a great accomplishment. And there are promising signs that the benefits will stick.
Today, scientists have the technologies that will allow them to really study tumors in ways they never have been able to study them before. For example, Dr. Weigel and Bridget Charbonneau, a post-doctoral fellow with her colleague Julie Ross, have combed the tumor bank at the University of Minnesota to identify about 180 patients with synovial sarcoma. About 50 of these patients had good tumor tissue available for testing, and the team is looking for genetic markers that might tell them which tumors are more likely to be dangerous. If they can tell which cancers are more deadly, they can give the stronger treatments to those people facing the most danger. And if they can find the bad actors within the cells, they also might be able to develop drugs specially designed to target the cancer.
As science advances, more targeted drugs are becoming available that may hit the sarcoma tumors in ways that could really knock them out. With great folks like Dr. Weigel using this science, we have reason to hope.
When asked for her final thoughts, Dr. Weigel wished to highlight the impact that Rein in Sarcoma have had on the specific research in the field of sarcoma at the University. This, she said, “can’t go unrecognized.” She considers RIS to have been “a huge impetus behind what is now becoming one of the premiere sarcoma programs in the country.” This has been “spearheaded by the Wyckoffs,” and is an “incredible testament” to them and to the whole group of volunteers who have offered their talents and dedication.
