The Board of Directors is made up of representatives of Affiliate Organisations, as well as individuals with experience as a kidney cancer patient, carer or healthcare provider, or have specific experience and skills that advance IKCC’s mandate. They serve as volunteers without remuneration. They are appointed by the Board with the endorsement of the Council of Affiliates.
Chair, Dr. Michael Jewett
MD, FRCSC, FACS
Dr. Jewett is Professor of Surgery (Urology) at Princess Margaret Cancer Centre and the University of Toronto. He was an enthusiastic supporter of the founding of Kidney Cancer Canada and was the founding and immediate past-Chair of the Kidney Cancer Research Network of Canada. He was awarded the Canadian Cancer Research Alliance Award for Exceptional Leadership in Patient Involvement in Cancer Research in 2017.
He serves as Surgical Co-Chair on the USA National Cancer Institute’s Renal Task Force. He has published more than 350 peer reviewed papers, many about kidney cancer. He has had a long interest in many aspects of kidney cancer research, patient care and knowledge transfer. He is a leader in academic Urology, has received many awards and is a frequent guest at national and inter-national urological associations and has been a visiting professor in 25 countries to more than 100 university departments and institutions.
Conflict of Interest M. Jewett 2023
Vice-Chair, Bryan Lewis
Bryan Lewis has led the advocacy efforts for KidneyCan – the Kidney Cancer Coalition – www.kidneycan.org. As a kidney cancer survivor, he has been an active legislative advocate and policy spokesman for the kidney cancer community in Washington, D.C. devoting most of his efforts to policy advocacy in the United States Congress & regulatory agencies. Most recently, he was successful in obtaining $20 million for the KCRP – Kidney Cancer Research Program (www.cdmrp.army. mil/kcrp/).
Bryan has also been appointed to the NCCN (National Comprehensive Cancer Network) Kidney Cancer Guidelines Panel. Previously, he held the positions of Vice President, Operations for Brand USA, and as Chief of Staff & General Counsel, U.S. Travel Association, a Washington, D.C.-based trade association.
Conflict of Interest Form B. Lewis 2023
Caleb Egwuenu has been a cancer patient advocate for more than 15 years and is a strong proponent of advancing cancer research and advocacy throughout Africa. He has been involved with International Kidney Cancer Coalition since its inception and attended the first international conference in Frankfurt, Germany. Since 2017, he has focused exclusively on advocating for kidney and lung cancer patients and furthering research in Africa.
Caleb is a committee member of the Patient Advocacy Committee of the International Association for the Study of Lung Cancer and serves as a Patient Advocate Chair for the 2024 World Lung Cancer Conference. Caleb has also participated in several cancer advocacy training programs such as Accelerating Anticancer Agent Development and Validation (AAADV), American Association for Cancer Research Scientist Survival Program, and the Society for Translational Academic Researchers (STARS) Scholar.
Conflict of Interest Form C. Egwuenu 2023
Margaret (Margie) Hickey
RN, MS, MSN
Margie Hickey is an advanced practice nurse for more than 40 years. She holds Master of Science degrees in both Nursing and Human Resource Administration from LaRoche College in Pittsburgh, USA. She is a Medical Education and Communications Consultant and serves as the Executive Director of the Society of Otorhinolaryngology and Head-Neck Nurses (non-profit) and the Ear, Nose and Throat Nursing Foundation (charity).
She was the Clinical Director at the Pittsburgh Cancer Institute of the University of Pittsburgh Medical Center, where she was responsible for establishing and managing inpatient and outpatient programs and Tulane Cancer Center in New Orleans. In 2000, Margie moved to the pharmaceutical sector, specializing in clinical research, medical communication, and patient engagement.
Margie has been a long-standing champion for nursing holding several elected and voluntary positions in local, regional, and national nursing organizations and has held many leadership positions with various nursing societies. Margie has been an active member of Oncology Nursing Society and has published as an author and editor for several nursing publications.
Conflict of Interest Form M. Hickey 2023
Dr. Eric Jonasch
Dr. Jonasch is Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Center at the University of Texas M. D. Anderson Cancer Center in Houston, Texas. He is director of the VHL Clinical Center at the MD Anderson Cancer Center, co-Director of the MD Anderson Kidney Cancer Research Program, and performs clinical, translational and basic research in kidney carcinoma and VHL disease.
Dr. Jonasch has authored over 190 articles published in peer-reviewed journals and is editor of the textbook: Kidney Cancer, Principles and Practice. Dr. Jonasch has a long history of service in the kidney cancer community. He serves as Vice-Chair of the NCCN Kidney Cancer Guideline Panel, is a member of the U.S. NCI Renal Task Force and is a Board member of the VHL Alliance.
Conflict of Interest Form E. Jonasch 2023
Claudia Ungarelli’s journey with kidney cancer began on the other side of an oncologist’s desk, where she found herself supporting her father through his battle with the disease. Unfortunately, kidney cancer has left its mark on her family, affecting not only her father but also her aunt and grandfather. Motivated by this personal connection, Claudia has dedicated herself to making a difference in the field of kidney cancer advocacy. Her involvement with Anture – The Italian Kidney Cancer Association – has been instrumental in shaping her commitment to this cause. Today, she not only volunteers for Anture, but also holds a position in its leadership team.
Claudia is also an advocacy specialist with expertise in public affairs and communication. Her career began in Brussels in 2018. Since then, she has held various roles, including in-house positions, at think tanks, and in public affairs and communication consultancies. Her approach combines her personal experience, volunteer work with Anture, and professional skills, and drives her commitment to the cause, both locally and through Anture’s affiliation with the International Kidney Cancer Coalition (IKCC).
Conflict of Interest Form C. Ungarelli 2023
Formerly CEO and Managing Director of Kidney Health Australia – Anne has been a member of the IKCC Board for the last four years. Since stepping down as CEO in May 2016, Anne has consulted to a number of not for profit organisations in Australia as well as having completed various projects in the health consumer space.
Anne pioneered Kidney Health Australia’s work in advocacy and support for Australians and their families affected by kidney cancer as well as having overseen the development of specific resources, a website, telephone information service and promotion of information about access to relevant clinical trials in Australia. As a Social Worker, Anne is passionate about equitable access to service delivery and the latest and most up-to-date information about all aspects of kidney cancer and patient support. Anne is Secretary/Treasurer of the IKCC and has been the Board lead for the management of World Kidney Cancer Day since its inception.
Conflicts of Interest Form A. Wilson 2023
Deb Maskens (Ex-Officio, Non-Voting Board Director)
Deborah Maskens is a long-time kidney cancer patient and patient advocate. Along with one other patient, she co-founded Kidney Cancer Canada in 2006 and played an active leadership role for 10 years. At a global level, she also served 10 years as a Founding Member and Vice Chair of the International Kidney Cancer Coalition, and as a Patient Advocate on the NCI Renal Task Force in Bethesda, MD.
Deb is a frequent speaker at national and international cancer meetings where she provides an evidence-based patient perspective, along with sound advocacy knowledge and experience.
Among her achievements in patient advocacy, in 2016, Deb was awarded the Canadian Governor General’s Meritorious Service Medal, Canada’s highest award for her volunteer service, dedication and professionalism in patient advocacy.
Most recently she has been appointed as an international patient advocate to the Scientific Advisory Committee of the National Center for Tumour Diseases (NCT) in Germany.
To help retain some of the knowledge and experience related to their kidney cancer experience and being a Director on the IKCC Board, individuals may be invited to stay involved and support the Board as an Ambassador for an agreed-upon period of time. Board Ambassadors do not hold any official position. We are grateful for their ongoing commitment and generosity to the global kidney cancer community.
Rose is a long-term patient survivor of kidney cancer and a passionate and active patient advocate. She became involved in advocacy and patients’ rights in the UK in 2003 and later led the “Fight for Life” campaign for NHS funded KC treatments. She now runs Action Kidney Cancer which is a grassroots patient led charity providing practical support and advocacy for the kidney cancer community in the UK. She enjoys a very busy life running the Action Kidney Cancer charity and is still dedicated to helping empower patients to play a full role in all aspects of their care.
Rose has just retired after serving 10 years as a full member of the National Cancer Research Institute Renal Cancer Group where she worked hard to establish meaningful patient involvement in all aspects of kidney cancer research ranging from clinical trial design through to survivorship studies. Rose is a founding member of the IKCC.
Berit has been involved in kidney cancer since 2009 following her partner’s diagnosis with papillary type II Renal Cell Carcinoma. To support him she researched the disease and its treatment. Knowing the needs of patients and caregivers in the same situation she established a patient support group and became an advocate for kidney cancer after her partner died. Berit is an active networker, connecting people with existing resources and highlighting gaps in services.
Being a cancer survivor herself she is committed to sharing her experience, bringing in the patient perspective into various publications (e.g. the German RCC guidelines but also scientific publications) and projects, as well as speaking at local, national and international meetings. Berit has been involved with the International Kidney Cancer Coalition since 2010. In 2017 she initiated a non-profit patient advocacy organisation Uronauten e.V., helping patients and caregivers with rarer genitourinary cancers to navigate their disease.
Dr. Elizabeth Perdeaux
Dr. Lizzie Perdeaux is a Senior Medical Writer at Oxford PharmaGenesis, a HealthScience communications consultancy based in Oxford, UK. Lizzie previously worked at the Myrovlytis Trust, a medical research charity that also provides health information to patients with Birt–Hogg–Dubé syndrome, a rare inherited form of kidney cancer. Whilst at the Myrovlytis Trust, she was the main point of contact for patients seeking information about their disease and developed an interest in writing accessible information for patients.
Lizzie completed her undergraduate degree and PhD research, both in genetics, at the University of Cambridge, and undertook her Post-Doctoral research at the Institute of Cancer Research in London, investigating the genetic causes of Wilms Tumour, a type of kidney cancer that affects children..
Joyce Graff founded in 1993 the VHL Family Alliance, a national non-profit organisation focused on von Hippel-Lindau (VHL). Over the next 20 years she oversaw its growth into an internation- al network of patient support groups for VHL and other hereditary kidney cancer syndromes. A cancer survivor herself (breast cancer, 1979), she has been the primary researcher and advocate for her husband and son with VHL since 1963.
She has written extensively on VHL, HLRCC, and pheochromocytoma. She served 10 years on the board of the National Organisation for Rare Disorders (NORD) and four years on the Director’s Consumer Liaison Group (DCLG) of the US National Cancer Institute. She has been a reporter for the Kidney Cancer Association International Symposia in Chicago (2011, 2012, and 2015). A frequent speaker at national and international cancer meetings, Joyce continues her patient advocacy work through the Powerful Patient and its weekly internet radio show. She is currently the Executive Director of the New England Regional Genetics Group.
Michael C. Herbst, PH.D.
Author and co-author of a large number of scientific papers and various books, Michael has written numerous scientific papers, both nationally and internationally. He was editor of Curationis, the Africa Journal of Nursing and Midwifery, and Nursing Update, a professional journal.
Michael was a member of staff of the Potchefstroom University for Christian Higher Education and University of South Africa. At the University of Venda, he was the first Professor and Head of the Department of Nursing Science and Acting Dean of the Faculty of Science. His advanced degrees include D Litt et Phil, D. N. Ed., and Dip. Occ. Health. Michael is currently Head of Health at the Cancer Association of South Africa. Michael has been accredited to provide online training to medical doctors, professional nurses, pharmacists and clinical social workers in oncology by the Health Professions Councils of Namibia.
To express interest in serving on the Board, please contact firstname.lastname@example.org.