Sarcoma Coalition Advisory Panel
The Purpose of the Advisory Panel is to:
Support the Sarcoma Coalition membership/Steering Committee 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.
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.
Denise Reinke, APRN, BC, AOCN – Founder of the Sarcoma Coalition – Denise Reinke will be joining 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 Sarcoma Patients EuroNet (SPAEN). This connection will provide an international link for Sarcoma Coalition. We look forward to this continuing collaboration with Denise.
Kennneth 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. He has a clinical interest and expertise in the management of retroperitoneal/abdominal sarcomas; soft tissue sarcomas of the trunk and limbs; and gastric, liver, pancreas, and neuroendocrine malignancies.
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.
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.
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.
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.
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.
Shelley Fuld Nasso, MPP – Sarcoma Coalition Advisor – is CEO of the National Coalition for Cancer Survivorship, where she advocates to transform the cancer care system for everyone touched by cancer. NCCS engages in public policy efforts to improve cancer care and empowers cancer survivors and caregivers to be a voice in public policy debates. Prior to joining NCCS in 2013, she led public policy efforts at Susan G. Komen. She is a graduate of Rice University and the Harvard Kennedy School.
Matthew R. Dicaprio, MD – Sarcoma Coalition Advisor – is a practicing Musculoskeletal Oncologist who wanted to do more for his local sarcoma family. Our goals are simple.” We want to be able to support our sarcoma families at every step of their journey with sarcoma.”.Sarcoma Strong – dedicated to raising awareness of Sarcoma, supporting our Sarcoma warriors & families,and raising funds to fuel research.
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.
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.
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, invited to present and discuss pertinent topics at Coalition quarterly meetings, 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 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.
Annie Achee – Co-Founder of the Sarcoma Coalition – ANNIEACHEE@AOL.COM – President of the National Leiomyosarcoma Foundation Co-founder of the Sarcoma Coalition, with Denise Reinke and Peter Wyckoff. Patient – Caregiver Advocate for the LMS Community and ardent supporter of the Sarcoma Research Community. Founder of the International Leiomyosarcoma Research Roundtable – a global initiative to focus on LMS basic and translational research – an annual Scientific Think Tank meeting, with year-round focus workgroups. The passion for serving as a Steering Committee member of the Coalition, paralells my commitment to the sarcoma patient/family community, serving them through education/advocacy/support/ and research advocacy as well. The ability to be a part of the Sarcoma Coalition, allows me to continue to bring organizations together to connect – build / strengthen networks of collaboration / collective voices that will launch projects to enhance quality of life outcomes in care/treatment/and survivorship of a sarcoma diagnosis.
Lisa De Young – Operations – LHDEYOUNG@GMAIL.COM – Lisa De Young is a founding member of the EHE Foundation and Board of Director, created in 2015. She is the past Director of Patient Liaison Services having served two terms. She brings a wide range of professional expertise from a rewarding career in Human Resources in the banking industry. She holds a Bachelor of Arts degree from California State University Fresno. For the last seven years Lisa has volunteered her time not only for the International EHE Support Group, but in the broader sarcoma community serving on the Sarcoma Coalition Steering Committee, including part of the inaugural committee. In addition, she has served three years on the SARC Research Advocacy Council. Her passion for patient advocacy and sarcoma research comes from the inspiration of the patients, family members, and caregivers she assists worldwide each day. Lisa collaborated and co-authored the very first international publications highlighting EHE symptom burden and quality of life issues challenging EHE patients:
Sadly, Lisa learned about cancer at a very young age when her 48-year-old mother was diagnosed with stage 4 breast cancer in 1981. This profound experience prepared Lisa for her sister’s breast cancer diagnosis in 2007, and her niece’s in 2021, as well as five additional family members facing various forms of cancer. Moreover, Lisa is a ten-year EHE sarcoma survivor! She learned through self-education and personal experience about many kinds of cancer, encompassing the various stages of the disease process. Each journey is different, yet fundamentally rooted in the quest for survival and finding a CURE.
Sharon Hammond, MD – Member – SUMMERSWAYFOUNDATION@GMAIL.COM – Dr. Sharon L. Hammond is a Vascular Surgeon in Denver, Colorado and is affiliated with Rose Medical Center. She received her medical degree from the Uniformed Services, University of the Health Sciences. Dr. Hammond completed her General Surgery residency and Vascular Surgery fellowship at Walter Reed Army Medical Center and served in the military for 16 years.
Sharon and her husband Sterling founded the SUMMER’S WAY FOUNDATION in 2017 following the loss of their only child from rhabdomyosarcoma. It was during Summer’s treatment and the cancer journey, that Sharon discovered how abysmal the funding for Rhabdomyosarcoma research and other rare childhood cancer actually was. Indeed, there had been no significant therapeutic advance in therapeutics for Rhabdomyosarcoma in over 25 years.
In an effort to change this trajectory for other patients with Rhabdomyosarcoma, to make a difference, the Summer’s Way Foundation has set as their mission to find a cure for Rhabdomyosarcoma and ultimately other rare childhood cancers and to provide local programs for families and their children impacted by childhood cancer.
Chandalyn Williams, MBA – Member – INFO@CURELMS.COM – Chandalyn Williams is a highly motivated and experienced executive professional, regarded for her ability to deliver outstanding results with the highest degree of expertise and professionalism. She holds a Bachelor of Arts degree in Business Administration and Communication Management from Jones International University, graduating Cum Laude; a Master of Business Administration from Texas Woman’s University and; is currently within one year of completing her Doctorate of Business Administration at Trident International University. Chandalyn has served as an inpatient volunteer with MD Anderson Cancer Center, advocated on public platforms, such as Rare Disease Day at the Texas State Capitol and led annual 5K Run/Walks for over nine years in support of Leiomyosarcoma (LMS) Cancer research.
“When my mother, Cynthia Solomon Holmes, was diagnosed on April 8, 2010 with Leiomyosarcoma (LMS) after visiting her doctor for a persistent cough, I was not prepared for how my world as I knew it would be turned upside down. Watching my mother fight this disease with the strength and vigor I knew to be her was an overwhelmingly painful experience. I felt physically helpless – but I knew how to pray. For her, my family, and me. Following only a three-month battle with this dragon, my mother succumbed to the disease, passing away at the age of 52. I vowed to turn my personal tragedy into something that could be a triumph for others who are faced with this disease through the creation of The Cynthia Solomon Holmes Foundation. I pray that through my efforts, individuals are inspired to support those battling this disease and in the daily fight for their right to live!” ~ Chandalyn Williams
Lennie Woods – Member – LENNIEWOODS@GMAIL.COM is the wife of Denny Woods and mother of Sara Woods and Jaqueline Woods which are her biggest loves and life focus. As a College of Charleston graduate and Charleston area native, Lennie has been successfully selling real estate. Her life revolves around her family, community, clients and raising her two beautiful daughters. Lennie’s life direction took a drastic change when her daughter, Sara, was diagnosed with Clear Cell Sarcoma. When told there was no cure, she immediately decided that this was not acceptable for her daughter or anyone suffering from this ultra-rare cancer. Lennie is blessed with a drive to get answers and connections needed for success in any roadblock she faces. Right now, she faces the biggest one of her life. Joined by some of her closest friends she is on a mission to find a cure for CCS and believes that God has put the right people in her life along the way to do this important lifesaving work. Her faith gets her through the scariest of times and she feels sure that a treatment for CCS is close.