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.
University of Minnesota Associate Professor and orthopedic surgeon Christian Ogilvie chose medicine so he could practice science, while working directly with people. He likes teaching people, educating patients. And he likes to fix things. He appreciates the chance to make a big difference in someone’s life, in a moment. To restore them, perhaps, to what they could do before.
Dr. Ogilvie has been a great asset for RIS. He has embraced our education mission: teaching residents about sarcomas, speaking to medical students through the RIS Maudlin Sarcoma Scholars Program. Dr. Ogilvie has also served in the RIS Board of Directors.
Family Beginnings
Christian Ogilvie’s father was a doctor. A spine surgeon, who spent years at the University of Minnesota and operated on many people with scoliosis. Even as a high school student, Dr. Ogilvie was drawn to the chance for sudden change. To take a crooked spine and make it straight, all in one setting.
In college, Dr. Ogilvie had the opportunity to do service work. He found it “really rewarding to work directly with people,” and he wanted to include this type of feeling with his professional work. He liked science, and decided medicine would be a great career. He returned to Minnesota to attend medical school here, at the University.
Before and during medical school, Dr. Ogilvie worked in Dr. Clohisy’s lab. Through this work he became interested in tumors. Although he considered pediatric medical oncology for a time, ultimately Dr. Ogilvie wanted to “intervene directly.” He liked performing surgical procedures, and he wanted to take the cancer out. So he took his residency in Orthopaedic Surgery, then a fellowship in Musculoskeletal Tumor Surgery at the University of Toronto.
Geography
Upon completion, Dr. Ogilvie moved to the University of Pennsylvania, where he was an Assistant Professor and a surgeon. He developed a busy practice, focused on tumors. In one single year, he saw 400 individual cancer patients.
When Dr. Clohisy was becoming Chair of the Orthopaedic Surgery Department at the University, he called to recruit Dr. Ogilvie back to Minnesota. In 2009, Dr. Ogilvie returned. He had met his wife here, and the two of them felt this was a good place to raise children.
At Minnesota, Dr. Ogilvie’s practice still involves tumors. He focuses on sarcoma, but does other things as well, including major trauma. He drew many connections between the two. Like sarcomas, fractures can occur anywhere in the body. Both trauma surgery and sarcoma surgery may involve bones and joints. And, you will not be surprised to hear that trauma surgery calls to Dr. Ogilvie because it offers the chance to take a crooked, broken bone and straighten it out, all in one setting; to place a plate on it; to help it heal.
You may be surprised to learn that unlike many other tissues in the body, bone really can heal. Cleanly, completely, and without a lot of scar tissue getting in the way of good function. If the conditions are right, if you give it enough time, bone will replace itself and be almost like new. Often, people can go back to doing just about everything they were doing before, because their bone will go back to doing what it was doing before.
Education
Medical students and residents may not get much education about sarcomas, even today. Through his practice, Dr. Ogilvie has seen the patients who don’t get diagnosed. Sometimes, an incomplete surgery by a non-cancer specialist will require a second revision surgery, bigger than it would have needed to be.
Dr. Ogilvie talks to people about sarcomas. He has presented at Grand Rounds for medical students twice, through the Wyckoff Sarcoma Scholar program, and expects to do this again. He speaks to orthopedic residents about sarcomas, since people will show up in their offices with lumps and bumps and pains. Most will be benign and harmless, but some will be cancer. He wants people to consider the cancer, before they cut.
Patients, too, need education. Teaching people is nice to do.
What is hard?
The hardest thing about Dr. Ogilvie’s job “is probably telling someone their kid has cancer. That’s difficult.” The parents are kind of helpless, and they have so many questions. Most times, they worry a lot. The second hardest thing? Telling someone they have metastatic disease. The third? Telling someone they have cancer.
It is rewarding, though, when you have the ability to tell people you can take out the cancer and they’ll be fine. When you can “educate them a little bit, make some plans” and attack the tumor. Or when a person has pain from cancer in their bone, and has trouble walking, and surgery can help them feel better. When you can “help out with the quality of life.”
There are lots of opportunities for constructive outcomes. Sometimes, these come in surprising forms. Allowing someone to go home, for even a few days, may be a victory.
We are thankful that Dr. Ogilvie has decided to embrace these challenges, here.
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.
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