Sarcoma Coalition Advisory Panel
The Purpose of the Advisory Panel is to:
Support the Sarcoma Coalition membership/Steering Committee in a non-voting capacity regarding technical questions or special requests to clarify current or future research endeavors that would be helpful to the Coalition membership/Steering Committee; in discussing possible collaborations for special projects collectively agreed upon.
Provide input to the Steering Committee and the Coalition membership; with technical advisory oversight to further new initiatives voted on by the membership.
Kenneth Cardona, MD, FACS – Sarcoma Coalition Advisor – Dr. Kenneth Cardona joined the Emory University faculty in 2012 after completing a fellowship in surgical oncology at Memorial Sloan-Kettering Cancer Center in New York and is currently the Associate Chief Medical Officer at Winship Cancer Institute as well as Professor, Division of Surgical Oncology at Emory University School of Medicine.
Dr. Cardona is a board-certified Surgeon and Surgical Oncologist with a clinical interest and expertise in the management of retroperitoneal/abdominal sarcomas as well as soft tissue sarcomas of the trunk and limbs. As a leader and active member of the Sarcoma Working Group at Winship Cancer Institute, he collaborates with soft tissue pathologists, medical and radiation oncologists, and interventional radiologists with expertise in the treatment of sarcomas to develop individualized treatment plans for each patient. Dr. Cardona is Chair of the National Cancer Institute’s ECOG-ACRIN Sarcoma Committee; Lead, Sarcoma Disease Team- Winship Cancer Institute, and Member of the TARPSWG and Clinical Trials Committee.
Richard Davidson, Chief Executive – Sarcoma Coalition Advisor – has been working in the third sector for more than two decades. Since July 2018 he has been Chief Executive of the bone and soft tissue cancer charity, Sarcoma UK. Before joining Sarcoma UK, he was Director of Engagement for the UK’s blood cancer charity, Anthony Nolan where he was responsible for overseeing communications, advocacy, fundraising and marketing. Prior to that he spent 11 years as the Director of Policy and Public Affairs at Cancer Research UK, the world’s largest cancer charity. He is Chairman of Game of Throne’s actress Emilia Clarke’s charity, SameYou, which is dedicated to increasing access to rehabilitation services after brain injury and stroke for young people and he is a trustee of the Devon Air Ambulance charity in the South West of England.
George Demetri, MD – Sarcoma Coalition Advisor – Dr. Demetri is director of the Sarcoma Center at Dana-Farber, director of the Ludwig Center at Dana-Farber/Harvard Cancer Center, and executive director for Clinical and Translational Research at the Ludwig Institute for Cancer Research.
EDUCATIONAL TITLES: Professor, Medicine, Harvard Medical School Director, Center for Sarcoma and Bone Oncology, Dana-Farber Cancer Institute Quick Family Chair, Medical Oncology, Dana-Farber Cancer Institute DF/HCC PROGRAM AFFILIATION Developmental Therapeutics Center at Dana-Farber/Harvard Cancer Center, and executive director for Clinical and Translational Research at the Ludwig Institute for Cancer Research.
His academic career has been devoted to applying novel insights from fundamental molecular biological and biochemical research to the problems of human cancer to develop rationally targeted anti-cancer therapeutics in an academic environment.
Leslie Doros, MD – Sarcoma Coalition Advisor – Leslie Doros is a pediatric oncologist by training and is currently the Acting Team Leader on the Sarcoma Team at the U.S. Food & Drug Administration based in Silver Spring, Maryland. She is also the Sarcoma Scientific Liaison and the ASCO Liaison.
Prior to joining the FDA, Dr. Doros was an Assistant Professor at George Washington University and was an Attending Physician in the Oncology department at Children’s National Hospital in D.C where she was the rare tumor expert in the pediatric solid tumor division. She has received funding from the Conquer Cancer Foundation, Hyundai Hope on Wheels, The Giant Food NextGen Award for The Children’s Cancer Research, and The Children’s Cancer Foundation for her research in pleural pulmonary blastoma.
Alessandro Gronchi, MD – Sarcoma Coalition Advisor – Dr. Gronchi received his MD degree from Milan University in 1992, and then completed his residency training in General Surgery at the San Raffaele General Hospital – Milan. During his residency he served for 2 years at the Italian Ministry of Foreign Affairs, working full time at the Lacor University Hospital in Gulu – Uganda. He then completed his training with a fellowship in Surgical Oncology at the National Cancer Institute – Milan – Italy in 1998. He visited Memorial Sloan Kettering Cancer Center in New York in 2002. He has been chair of the Sarcoma Service at the National Cancer Institute – Milan – Italy since 2001. He holds the National Scientific Habilitation for full professor of General Surgery.
He serves as chair of the soft tissue sarcoma committee of the Italian Sarcoma Group (ISG), past-chair of the EORTC Soft Tissue and Bone Sarcoma Group, past president of the Connective Tissue Oncology Society (CTOS) 2017, President Elect of the Italian Society of Surgical Oncology (SICO), member of the Sarcoma Disease Site Working Group of the Society of Surgical Oncology (SSO) 2018-2021; he is a member of the European Society for Medical Oncology (ESMO), the European Society of Surgical Oncology (ESSO), the European Surgical Association (ESA) the American Society of Clinical Oncology (ASCO) and is honorary member of the Polish Society of Surgical Oncology (PSSO). He is one of the initiators of a Trans-Atlantic collaborative effort on retroperitoneal sarcoma (Trans-Atlantic RetroPeritoneal Sarcoma Working Group, TARPSWG), which involves over 50 institutions worldwide.
He mainly investigates Sarcoma, Surgery, Internal medicine, Soft tissue sarcoma and Oncology. The study incorporates disciplines such as Radiation therapy, Radiology, Soft tissue and Cancer in addition to Sarcoma. His work carried out in the field of Surgery brings together such families of science as GIST and Disease. Dr. Gronchi has authored more than 320 scientific publications, serves as Associate Editor of the Sarcoma Journal, Clinical Sarcoma Research, Tumori Journal, Journal of Surgical Oncology and Annals of Surgical Oncology.
Scott Okuno, MD – Sarcoma Coalition Advisor – Dr. Okuno’s research objective is to allow patients to have access to new promising drugs for their cancers. The hope is that these therapies will replace present therapies and be more effective and better tolerated, both in the short and long term. By working collaboratively with other colleagues here at Mayo Clinic and at other medical centers, Dr. Okuno gets to provide patients with the most effective and promising treatment options. Professional highlights include: Medical officer, Sarcoma Alliance for Research Through Collaboration (SARC), 2011-present, founding and active member, Midwest Sarcoma Trials Partnership, 2011-present, active member, and Sarcoma Working Group, Radiation Therapy Oncology Group, 2010-present.
Veronika Panagiotou, PhD – Sarcoma Coalition Advisor – joined NCCS in the Summer of 2021 and serves as the Advocacy and Program Manager. Her responsibilities include managing the Cancer Policy and Advocacy Team (CPAT), Survivorship Champions and various advocacy initiatives.Dr. Panagiotou’s passion for working in survivorship and advocacy emerged after being diagnosed with Non-Hodgkin’s Lymphoma when she was 25 years old. As a young adult cancer survivor, she has witnessed firsthand the need for recognition of the financial toxicity of treatment, the creation of more supportive services, and the availability of survivorship care. Before joining NCCS as a staff member, Veronika was an active CPAT member. She has met with her representatives to share her story and to advocate for policies such as the Affordable Care Act that saved her life by giving her access to cancer treatment.
Dr. Panagiotou obtained her doctorate in Community Engagement at Point Park University in 2021. She defended her dissertation entitled, “Do Service-Learning Models Create an Opportunity to Cultivate Civic Engagement Outcomes at Point Park University? A Phenomenological Study of Students’ Perspectives in Pittsburgh, Pennsylvania.” Dr. Panagiotou was awarded the “Student Award for Excellence in Community Engagement” for the academic year of 2017-2018 after creating the Pioneer Pantry which serves college students, faculty, and staff experiencing food insecurity on campus.
Denise Reinke, APRN, BC, AOCN – Co-founder of the Sarcoma Coalition – Denise Reinke is a valued member of the Sarcoma Coalition in an advisory capacity (non-voting). Given her background and involvement in the formation of the Sarcoma Coalition and her continued collaboration with the sarcoma patient advocacy community, we welcome her involvement. Denise has engaged several members of the Sarcoma Coalition to lend the patient voice to explore the potential of repurposing drugs for sarcoma treatment. Additionally, she is a Board member of the Sarcoma Patients Advocacy Global Network (SPAGN). This connection will provide an international link for Sarcoma Coalition. We look forward to this continuing collaboration with Denise.
Dottie Shead, MS – Sarcoma Coalition Advisor – Dottie is the Senior Director of Patient Information/Operations at The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 32 of the world’s leading cancer centers devoted to patient care, research, and education, is dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. Dottie is a passionate healthcare leader with extensive expertise in the development of the NCCN Guidelines, and implementation of health literacy, diversity, language services, patient education, and engagement best practices. She has over 20 years of experience with NCCN, working on both the NCCN Clinical Practice Guidelines in Oncology and the NCCN Guidelines for Patients. In her current role, Dottie oversees the development of all patient/consumer education initiatives in oncology. She is detail-oriented, and adept at building impactful relationships with multidisciplinary specialists in oncology and patient advocacy groups.
Barbara Van Hare – Sarcoma Coalition Advisor – Barbara Van Hare is Director of Foundation Partnerships for the Rare Cancer Research Foundation (RCRF). She works as a patient advocacy liaison with the Broad institute / Koch Research Institute. The Rare Cancer Research Foundation is a 501(c)(3) non-profit dedicated to curing rare cancers through strategic investments and innovative collaborations that facilitate effective research and accelerate deployment of promising therapies. One of RCRF’s key initiatives, Pattern.org, is a patient-research matching program that enables patients being treated anywhere in the U.S. to directly donate their tumor tissue, fluids and medical data to research with all results being de-identified and shared broadly.
Barbara joined RCRF in 2014 and currently leads all patient advocacy and institutional relationships, as well as oversees Pattern.org’s tissue collection process. She has worked closely with a large number of rare cancer foundations including The EHE Foundation, the National LeioMyoSarcoma Foundation, Angiosarcoma Awareness, the Clear Cell Sarcoma Foundation (formerly Sara’s Cure), the Desmoid Tumor Research Foundation, the Chordoma Foundation, RMC Support and many others. She works with each group to help educate patients on the value of tissue donation, the impact it can have on research and the opportunity to donate excess tissue through pattern.org. Since much of this patient outreach is conducted through disease-specific Facebook groups, newsletters, webinars and in-person or Zoom meetings, Barbara works with the associated Foundation on activities and involvement that are appropriate for each group. In addition, Barbara is a member of the Rare Disease Diversity Coalition (RDDC which is an initiative of the Black Women’s Health Imperative) and is involved in both their Patient & Caregiver and Research & Clinical Trial Workstreams.
Steering Committee
The Sarcoma Coalition Steering Committee champions Coalition member organizations coming together in unity, as a patient advocacy network, sharing patient experiences and strategies for roundtable discussion; focusing on patients’ access to care and credible treatment through Sarcoma Centers of Excellence.
The collective goals of this patient advocacy network are to enhance and improve delivery of care/treatment from diagnosis to end-of-treatment and long-term survivorship. Guest speakers for General Meetings are invited to address patient advocacy areas of interest.
The Sarcoma Compass: Advocacy & Patient Education Support Network, addressing special topics of interest to member advocacy groups and their respective patient communities, are invited to present and discuss pertinent topics outside of the General Meetings (special information/education sessions). All information session opportunities offer the groundwork for collaborative projects to build consensus, strategize, and execute on behalf of the sarcoma patients and families we all serve. The Sarcoma Compass series recordings can be found here: Sarcoma Coalition Education Library.
The Sarcoma Coalition Steering Committee provides a steadfast guiding framework, to assist Coalition members’ ‘think tank’ to shape the vision, propel the mission, and guide purpose of the Coalition. The Steering Committee can provide resource support and oversight for collective efforts to foster project collaboration and initiatives, having the potential to impact short-term as well as long-term patient/family-centric outcomes.
Meredith Berger, Wendy Walk – Steering Committee Member – Meredith is the Patient Care Coordinator for Wendy Walk. In 2016, my then 17 year old son Julian was diagnosed with myxoid spindle cell sarcoma in the palm of his hand. I will never forget the call from the hand surgeon (who removed the mass thought to be benign) when he told my husband and me that Julian would need an amputation. Finding Wendy Walk in a Facebook group after Julian had completed treatment felt meant to be. And now being their Patient Care Coordinator, I get the special opportunity to connect with sarcoma patients. Julian has been one of the luckier ones. He kept his hand, did radiation treatment and now continues with yearly surveillance. I feel so fortunate and want to give back.
Wendy Walk is the largest and best-known sarcoma foundation in the Midwest. We are a resource for patients and families touched by sarcomas, an uncommon and often misdiagnosed group of bone and soft tissue cancers that strike children and adults alike. The Foundation raises awareness of sarcoma and funds to support the research of this rare cancer. Join us as we fight for a cure for sarcoma.
Erin Miller, Lazarex Cancer Foundation – Steering Committee Member – Consultant – Erin is the former Development Manager for the Lazarex Cancer Foundation. Erin Miller is a graduate of Florida State University School of Business with a of Science degree. After graduating, she worked as a Marketing Representative for IBM selling mid-range computer hardware and software. Erin was the Developmental Manager of Lazarex Cancer Foundation with her sister Dana Dornsife who founded Lazarex Cancer Foundation as a result of Erin’s husband’s cancer diagnosis. Advocating for people diagnosed with cancer is my life’s passion. Collaboration is key for the greater good!
Allan Swartz, Rein In Sarcoma – Steering Committee Member – Allan is a six-year survivor of a Sarcoma once called MFH. I was a Board member for 6 years. I have advanced degrees in social work and hospital and healthcare administration. Since 2009 I have been the Rein in Sarcoma Party in the Park Chair, worked on the Raffle Committee, served on the Board of Directors and an RIS liaison to other sarcoma organizations. I look forward to many more years of fulfilling the mission of Rein in Sarcoma.
Rein in Sarcoma is a non-profit organization that educates, supports and funds research for sarcoma cancers, a rare group of bone and soft tissue tumors. Founded in 2001 by Karen Wyckoff, who died from sarcoma, the foundation hosts events, provides resources and connects patients and survivors worldwide.