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.
It is hard to watch patients die. Yet getting to know people who face cancer and seeing how they persevere can be gratifying and inspirational. Treating cancer patients helps keep University of Minnesota Professor and orthopaedic surgeon Dr. Ed Cheng grounded and provides him with perspective. Dr. Cheng considers it a privilege to be a physician, to have the opportunity to care for people every day. He also considers Karen Wyckoff to be a great example of how “you can make a difference. One person can make a difference.”
Dr. Cheng was not involved in Karen’s medical care. He knew that patients who are motivated can make a difference, however, and was intrigued by the opportunities her ideas presented. So when the University of Minnesota asked for a doctor to help out with the new organization, carried forward by her parents, he agreed. Dr. Cheng became a founding board member. It has been “quite exciting” to see Rein in Sarcoma grow. RIS has generated energy and enthusiasm at the University, money has been raised to support cancer research, educational materials have been created for doctors and patients, and a new website has been developed. RIS Dr. Cheng teaches surgery at 2010 Mini-Medical School really has been “instrumental in the care, management and support of patients who have this terrible disease, sarcoma.”
When asked how he became involved in the educational video prepared for patients facing amputation, Dr. Cheng said: “You know they say ideas are born out of necessity, and that was certainly the case here.” The life-changing effects of losing a limb are “so paramount,” patients need to sort through this over a much longer time frame than is available in an office visit. Patients need to understand not only the functional and logistical changes they can expect but also the psychosocial aspect of coping with the loss of their limb. They need to have this information provided in a way that is sensitive and compassionate. If doctors don’t provide help for patients going through this challenging process, they are missing the “art of medicine.” One way to help patients is by hearing and learning from others who have gone through similar experiences.
But when Dr. Cheng set out to look for resources to share with his patients, he couldn’t find them. He identified this as an unmet medical need and decided to ask RIS for funding to help create materials. RIS did award funding, and Dr. Cheng led the efforts to make a video including interviews with adults who have undergone major surgery and limb amputation. He personally found the movie clips inspirational to watch. He learned things he had not known about what people experience, and he has incorporated this knowledge to help his discussions with new patients.
The intent of the video was to help as many people as possible, so it is posted on YouTube as well as the websites of the University’s Cancer Center Sarcoma homepage and Rein in Sarcoma. With time, more and more people are watching the clips, some from places far away.
Those who’ve been involved in making the movie have noted the gratification of knowing that they’ve helped people elsewhere, some of whom they haven’t even seen. “So we have to say thank you to KWRISF,” Dr. Cheng added, “because without them we would not have been able to do it.” Another RIS-funded video is in process to address children’s experiences.
Dr. Cheng always wanted to be a doctor, since he was a boy in elementary school. He received his Medical Degree from Northwestern University in 1983 and did a General Surgery Residency there. He moved to Harvard, where he completed an Orthopaedic Surgery Residency in 1989 and Fellowships in Orthopaedic Oncology and Pediatric Orthopaedic Oncology in 1990. Also in 1990, Dr. Cheng joined the University of Minnesota faculty. He has practiced here ever since.
From time to time, of course, Dr. Cheng does leave the state. For example, this was his second year traveling to Mongolia as a medical missionary, as part of his ministry through the Christian Medical & Dental Society. Dr. Cheng felt called to a broader mission, beyond his practice here, and wished to offer this service in Christ. He had the opportunity to consult with physicians in Mongolia and help care for their patients. He found it rewarding to educate doctors about cancer treatments and complex joint replacements and to help them build their infrastructure. “This is not giving them a fish, but teaching them to fish,” which may leave a lasting legacy. And through the wonders of electronic communication, Dr. Cheng can continue to consult with physicians there, even from his place in Minnesota.
Dr. Cheng loves his work as a physician. “How many people have the chance to help someone out all the time?” he asked. Every day, he gets to “see all these stories” and meet new people. He also has the chance to teach other doctors. And one never knows what else may come along. “RIS just popped up,” he said, and “look what it’s become.” Dr. Cheng would encourage young people who are interested to consider this career. He also would encourage people to “have confidence in knowing that if you think big, you can make a difference.”
Orthopedic surgeon Dr. Denis Clohisy saves lives. With a world-class multidisciplinary team at the University of Minnesota, he is working to save more. RIS funding provides a creative spark and a vital source for a “hopeful research culture” at the U, which may one day contribute badly needed treatment advances for sarcoma. For now, each day, the University team provides outstanding patient care, in an environment enriched and energized by RIS.
Dr. Denis Clohisy has been treating sarcoma patients for 20 years. A surgeon who joined the University of Minnesota Medical School faculty in 1991, Dr. Clohisy was named Chair of the Department of Orthopedic Surgery in November 2007. With a world-class multidisciplinary team, Clohisy is leading efforts to develop better treatments for patients who have sarcoma cancer. These treatments are badly needed, as can be seen in the persistently hard survival rates that accompany some diagnoses. Yet one young woman who lost her life to sarcoma started a revolution, here in Minnesota. Her spirit of hope, her wish for community, can be felt every day. Rein in Sarcoma (RIS) has grown from its small beginnings in 2001, just months before Karen died, to become an important spark for creative ideas, hopeful energy, and inspired patient care at the University.
Have you ever seen the sunflowers? At any event hosted by RIS, gorgeous cloth flowers mark the survivors. At the Party in the Park celebration each July, the sunflowers are out in force. Asked how it feels to see so many people walking around who are there because they have been treated at the University, Dr. Clohisy said this picnic is “the most rewarding day of the year” in his professional life. He loves to have his own children join him there, to see the impact his work is having on so many other lives. The children he has treated hold a special place in Dr. Clohisy’s heart. So, too, do the families who have lost someone to sarcoma. To see their willingness to participate in the organization, despite their loss; “it’s really inspiring.” And hopefully this means the family believes their loved one received the best care possible, even though they could not be cured. This picnic is a very special thing.
Asked about the impact RIS has had at the University, Dr. Clohisy discussed the practical support for research, at a time when it is extremely difficult to get funding. By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.” RIS also has created a culture of scholarship, research and energy that has drawn more people to the field. More doctors are treating sarcoma patients, more scientists are researching sarcoma cancers, and the team works together more collaboratively to share and develop ideas. This is really important. The young post-doctoral scientists dedicated to sarcoma research, in particular, may be the ones who discover breakthrough treatments. Ten years ago, there were not graduate students who knew much about sarcomas or cared to focus their research in the field. This has changed.
By providing money that allows researchers to test their ideas, a necessary first step before they can seek large-scale funding from major organizations, RIS has created “a hopeful research culture.”
University scientists are succeeding, as measured by publication of their work in leading scientific journals and by research funds granted, including a large grant from the prestigious National Institutes of Health. Cutting-edge genetic research takes place at Minnesota, enabled in part by RIS investments.
Yet the most important impact RIS has had goes way beyond this funding. The education and support for patients who otherwise would feel extremely isolated; the collaborative energy among the medical team; the hopeful research culture? All created through RIS. As Dr. Clohisy observed, “If you think about that, it’s quite impressive.” Dr. Clohisy joined the RIS Board of Directors in January of 2017.
You who are reading this article may have a deeply personal understanding about the value RIS brings; the special collaboration between RIS and the University of Minnesota; the need for medical advances. We hope you will continue to support this work with your time, your energy and your financial resources.
We also hope you will continue to share your smiles with other families who face sarcoma. You do remember, how much those smiles can mean?
