Speaker Bios
Stephanie Alband
Executive Director, PPA
Stephanie Alband, MSBA, joined Pheo Para Alliance in March of 2019. She has over 20 years of experience in the nonprofit industry, with ten years working exclusively for rare disease organizations, including the Huntington’s Disease Society of America and Angioma Alliance. Her experience with her daughter’s rare cancer has helped her better understand and successfully navigate the unique challenges faced by the rare disease community. She currently serves as the President for the International Neuroendocrine Cancer Alliance (INCA) and previously served as Communications Chair and a Member of the Board of Directors.
She lives in San Diego county with her husband and two girls. She enjoys hiking and the outdoors.
Justin Annes
Endocrinology, Geneticis
Justin Annes received his MD PHD degrees from New York University Medical School (2004) where he studied the regulation of Transforming Growth Factor-β (TGF-β) activity with Dr. Daniel Rifkin. He subsequently trained in Internal Medicine and Clinical Genetics at Brigham and Women’s Hospital (BWH) / Harvard Medical School (2004-2009). During this period, he worked with Dr. Douglas Melton at Harvard University on understanding the molecular pathways that govern islet β-cell growth. His laboratory interest in Neuroendocrine Cell Biology led him to develop Neuroendocrine Tumor (NET)-focused clinical programs at BWH and the Dana Farber Cancer Institute while a Harvard Medical School Instructor (2009-2012). In 2012, Dr. Annes moved to Stanford University (Assistant Professor) where his Laboratory explores the growth-control of islet β-cells and develops novel animal models of the hereditary Pheochromocytoma and Paraganglioma (hPPGL) Syndrome. The goals of this research are to understand the molecular mechanisms that control NET development, identify growth-associated cellular weaknesses that may be therapeutically leveraged and prove the benefit of these therapeutic targets in a pre-clinical mouse disease model. Accordingly, Dr. Annes’ laboratory has incorporated the power of medicinal chemistry to explore novel therapeutic approaches to hPPGL-related tumors. Clinically, Dr. Annes has run a hereditary NET-focused clinic at Stanford (Endocrinology) since 2012, which cares for pre-symptomatic and symptomatic NET-affected patients and families. He is Head of Stanford’s Pheochromocytoma and Paraganglioma Program within the Endocrine Oncology Cancer Program (2018).
Isabelle Bourdeau
Endocrinology
Isabelle Bourdeau is a Full Professor of Medicine at the Centre hospitalier de l’Université de Montréal (CHUM) and a researcher at the CHUM research center since 2004. She obtained her certification as a specialist in endocrinology and metabolism in 2000. She did post-doctoral training in genetics of endocrine tumors and adrenal gland diseases under the supervision of Dr. Stratakis at the National Institutes of Health, Bethesda, USA.
She has been funded by the FRQ-S since 2004 as a Junior and Senior Clinical Scientist. She conducts translational research on adrenal gland tumors. Dr. Bourdeau is the author of over 100 scientific articles and book chapters. She is the director of the interdisciplinary adrenal tumor team at the CHUM which is recognized by the Ministry of Health as a quaternary center in Quebec. Since 2009, she is the director of the adrenal gland tumor biobank at the CHUM.
Luke Buchmann
Head & Neck Surgery
Luke O. Buchmann, MD is a Professor of Surgery in the Department of Otolaryngology – Head and Neck Surgery at the University of Utah. Dr. Buchmann’s clinical practice involves the diagnosis and surgical management of head and neck neoplasms including those of the upper aerodigestive tract, salivary glands, thyroid and the neck. He has additional expertise in microvascular reconstruction following head and neck cancer surgery. Research interests include evaluating functional outcomes following head and neck cancer surgery including swallowing, quality of life outcomes, and the evaluation of patient levels of psychological distress surrounding their cancer diagnosis.
He completed his residency at the University of Kansas, and a fellowship in Head & Neck Surgery and Microvascular Reconstruction at the Medical University of South Carolina. Dr. Buchmann has published in numerous medical journals and serves on a national committee related to head and neck cancer.
Dr. Buchmann enjoys skiing, mountain biking, hiking, backpacking, and camping. He and his wife have two wonderful children.
Jaydira Del Rivero
Endocrine Oncology
Dr. Del Rivero earned her medical degree from the University of Veracruz in Veracruz, Mexico and completed her internal medicine residency at Woodhull Medical and Mental Health Center/NYU-Langone Medical Center.
Dr. Del Rivero completed a fellowship in Endocrinology, Diabetes and Metabolism at The Inter-Institute Endocrinology Training Program (IETP) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), The National Institute of Child Health and Human Development (NICHD), and The National Institute of Dental and Craniofacial Research (NIDCR) where she was part of a research team developing clinical trials for pheochromocytoma and paraganglioma. She then joined as Assistant Professor at the Montefiore Einstein Center for Cancer Care (MECCC) where she specialized in endocrine oncology involving thyroid cancer, parathyroid and adrenal tumors, and clinical research for gastroenteropancreatic neuroendocrine tumors.
She subsequently completed a second fellowship in medical oncology at the National Cancer Institute (NCI) with a research focus on endocrine malignancies. Dr. Del Rivero is board certified in Internal Medicine, Endocrinology, Diabetes and Metabolism and Medical Oncology.
Dr. Del Rivero is a Physician Scientist in the Developmental Therapeutics Branch. She is the Principal Investigator of the Natural History Study for Neuroendocrine Neoplasm and Adrenocortical Cancer to provide the basis of further development of therapeutic interventions, prevention/screening guidelines, endpoints for future clinical trials. She is also the national PI of an NCI’s National Clinical Trials Network (NCTN) with the Alliance for Clinical Trials in Oncology “A Prospective, Multi-Institutional Phase II Trial Evaluating Temozolomide Vs. Temozolomide and Olaparib For Advanced Pheochromocytoma And Paraganglioma”
Dr. Del Rivero’s current efforts is the development of novel treatment approaches and targeted therapies for endocrine malignancies such as advanced gastroenteropancreatic neuroendocrine tumors, adrenocortical cancer and pheochromocytoma/paraganglioma
Amanda Düsing
Co-Founder, Paradifference Foundation
Amanda was diagnosed with SDHB malignant paraganglioma in 2008, aged 18. In 2013 it metastasized to her bones and shortly thereafter her family founded the Paradifference Foundation with the aim to fund research within the field of paraganglioma and pheocromocytoma. She is currently living in London with her husband and two young children. Alongside her work with the Paradifference Foundation she works as Chairman and Vice President for Blaklader Workwear.
Miranda Edwards
Patient Advocate
Miranda turns her storytelling into practical tools that help patients and clinicians navigate the gray zones of complex care. She’s uses her survival as a blueprint for self led advocacy and improved collaborative care.
Beyond the medicine, Miranda focuses on radical self-love and living fully — reminding everyone that we are always more than a diagnosis or prognosis. Her mission is simple but fierce: pheo can take a lot, but it will never take away our fabulous.
Shereen Ezzat
Endocrine Oncology
Dr. Ezzat obtained his medical degree from the University of Manitoba, completed his residency training at the University of British Columbia, and did post-doctoral research training in molecular oncology at UCLA School of Medicine in Los Angeles.
A specialist clinician with more than 30 years of focus on Endocrine Oncology. He teaches a number of courses, including physiology, biochemistry, and developmental biology of neuroendocrinology. With a publication H-index of 90 in more than 300 original articles he also contributed to more than 50 book chapters and reviews in the field of Endocrine Oncology. He has given over 200 invited lectures to national and international scientific audiences and has received many awards from national and international scientific and other organizations, including the 2023 CSEM Jacques Genest Plenary Lecture, the 2014 Maureen Coleman Award of the Carcinoid Neuroendocrine Tumor Society (2014), the Distinguished Service Award of the Canadian Society of Endocrinology & Metabolism (2012), an Endocrine Society Outstanding Abstract Award (2012), the Royal College of Physicians/CSCI Distinguished Scientist Award (2008), the Endocrine Society Abbott Research Mentor Award (2006), the Novartis Senior Investigator Award of the Clinical Research Society (2006) and the Gentle Giant Award of the Pituitary Network Association (2006).
Dr. Ezzat has served as an Editorial Board member for a number of journals including Endocrinology, Cancers, Journal of Clinical Endocrinology & Metabolism, American Journal of Physiology, Journal of Endocrinology, Laboratory Investigation, Endocrine Practice, and BMJ-Endocrine. He is a regular reviewer for the New England Journal of Medicine, Annals of Internal Medicine, and Nature Reviews.
Lauren Fishbein
Endocrinology, Genetics
Dr. Fishbein is currently an Associate Professor of Medicine at the University of Colorado School of Medicine in the Division of Endocrinology, Metabolism and Diabetes with a secondary appointment in the Department of Biomedical Informatics. Dr. Fishbein has a strong interest in personalized medicine including understanding the impact of germline predisposition genetics for endocrine tumor syndromes, as well as understanding neuroendocrine tumor development and metastatic disease. Her research program focuses on investigating the interplay between somatic and germline genetics in neuroendocrine tumors, with a focus on pheochromocytoma and paraganglioma. She has served as chair on several committees for national and international societies, including the Endocrine Society, the North American Neuroendocrine Tumor Society, and the American-Australian-Asian-Adrenal Alliance (A5) research consortium’s Pheo/Para Working Group. Her research has been funded by the American Cancer Society and the National Institutes of Health.
Camilo Jimenez
Endocrine Oncology
Dr. Jimenez is a Tenured Professor of Endocrine Neoplasia and Hormonal Disorders at the University of Texas MD Anderson Cancer Center. He is the principal investigator of six clinical trials for patients with metastatic pheochromocytomas and paragangliomas. His research led to the identification of high-specific activity MIBG as an effective medication for metastatic pheochromocytomas and paragangliomas; this medication became the first FDA-approved medication in the United States for this indication. Dr. Jimenez has performed extensive clinical research in the field of endocrine cancer with a particular interest in pheochromocytomas and paragangliomas. Dr. Jimenez was one of the first clinicians to describe the use of tyrosine kinase inhibitors in patients affected with sporadic and hereditary (Von Hippel-Lindau and Paraganglioma syndrome type 4) metastatic pheochromocytomas and sympathetic paragangliomas. His observations led to the development of clinical trials with tyrosine kinase inhibitors including the phase 2 clinical trial with Cabozantinib (NATALIE Trial) which reported that Cabozantinib is an effective treatment for the disease. This work was published in the Lancet Oncology in 2024 and was recognized with the award “the Manuscript of the Year” by the Division of Internal Medicine. Dr. Jimenez is the leading worldwide principal investigator of the phase 2 clinical trial with Belzutifan for patients with metastatic pheochromocytoma and paraganglioma. Belzutifan was approved by the FDA for the treatment of patients with metastatic and progressive pheochromocytomas and paragangliomas on May 14, 2024. This is the second FDA approved therapy for patients with these tumors and the first oral FDA-approved medication. Dr. Jimenez also characterized inherent complications related to excessive hormonal secretion and tumor burden distinctive of this disease. His seminal accomplishments include assessing the value of antiresortive agents and chemotherapy against bone metastases; demonstrating that systemic chemotherapy with cyclophosphamide, vincristine, and dacarbazine is associated with improved overall survival; describing the clinical predictors of aggressiveness and overall survival of these tumors, the value of surgery in patients with metastatic disease, and the managing of gastrointestinal and cardiovascular complications.
Dr. Jimenez has published 150 manuscripts in high-impact journals such as the Lancet Oncology, Nature Reviews in Endocrinology, Annals of Surgery, Clinical Nuclear Medicine, and the Journal of Nuclear Medicine and chapters for prestigious books, including Harrison’s Principles of Internal Medicine. He was a member of the editorial board for the Journal of Clinical Endocrinology and Metabolism. Dr. Jimenez presented at the Schimke Memorial Lecture Grand Rounds at the University of Kansas and has been invited to give lectures for Grand Rounds at several other institutions in the US, Canada, Australia, Europe, Japan, South America, and Africa. Dr. Jimenez has lectured in many national and international scientific meetings. He was the co-chair of the International Society for Pheochromocytoma and Paraganglioma Research PRESSOR. He was recognized by the PheoPara Alliance because of his contributions to the field with the 2015 Science Award. Dr. Jimenez was the Chair of the Diversity and Membership Committee of the North American Neuroendocrine Tumor Society NANETS. His very focused and successful career has positioned him as an example to be followed by the new generations of endocrinologists. Emblematic of this success, the Endocrine Society invited him, four years in succession, to give the honorary lecture titled “How I got here? A personal journey.”
Karel Pacak
Endocrinology
Dr. Pacak is a board-certified endocrinologist and an internationally recognized expert in the diagnosis and treatment of neuroendocrine tumors, especially pheochromocytoma and paraganglioma. He graduated summa cum laude from Charles University, Prague, Czech Republic in 1984. In 1990, he began his postdoctoral fellowship at NINDS. In 1995, Dr. Pacak began his residency in internal medicine at the Washington Hospital Center under Dr. L. Wartofsky, followed by a fellowship in endocrinology, diabetes, and metabolism at NIH. In 1998, he established a new Program for Neuroendocrine Tumors focusing on pheochromocytoma and paraganglioma at NICHD. He received his Ph.D. in 1993 and his D.Sc. in 1998 in the field of neuroendocrinology from Charles University. In 2006, he was awarded a lifetime professorship in Internal Medicine at Charles University. Currently, Dr. Pacak serves as the Medical Director for the Center for Adrenal Endocrine Tumors at Akeso Hospital in Prague, Czech Republic.
Dr. Pacak established the International Symposia on Pheochromocytoma. He also helped co-found a new Asian Alliance for the Study of Neuroendocrine Tumors in 2010. He is a recipient of numerous awards including the Peter Heimann Memorial Award at Yale University, International Association of Endocrine Surgeons; NIH Director’s Mentor Award, Award for Cure from Pheo Para Alliance, NICHD Director’s Award of Merit, Pincus Taft Memorial Lecture the Highest Award from Endocrine Society of Australia, and Jessenius Gold Medal from Slovak Academy of Sciences. Dr. Pacak is the author of more than 305 scientific peer-reviewed articles, 98 book chapters, and 5 books.
Jesse Pasternak
Endocrine Surgery
Dr. Jesse Pasternak is an endocrine surgeon specializing in the surgical management of thyroid, parathyroid, and adrenal tumors. He completed his undergraduate studies at McGill University before earning his medical degree and completing his residency at McMaster University in Hamilton. Following this, Dr. Pasternak pursued advanced training as an Orlo Clark Fellow in Endocrine Surgery and Oncology at the University of California, San Francisco (UCSF).
In addition to his surgical training, Dr. Pasternak holds a Master of Public Health (MPH) degree from Harvard University, where he focused on epidemiology. Currently a surgeon at the University Health Network, he is dedicated to minimally invasive endocrine surgery, aiming to improve patient outcomes through advanced surgical techniques.
As a researcher, Dr. Pasternak’s work centers on clinical endocrine surgery and health outcomes, contributing to the evidence base that guides the treatment of endocrine tumors.
Dean Ruether
Medical Oncology
Bio coming soon!
Genna Rod
Patient Advocate
Genna lives in Ottawa, Ontario, Canada. Her story began in her early twenties when she was a university student. In December 2023, Genna underwent an adrenalectomy at The Ottawa Hospital to remove the pheochromocytoma. While the tumor was gone, her energy levels had not been restored. Her remaining adrenal gland does not produce sufficient cortisol, leaving her adrenal insufficient. Genna’s journey is not over. She is now receiving care at the Princess Margaret Cancer Centre in Toronto, where testing and surveillance continue. This chapter may not yet be closed, but Genna is determined to keep fighting for the care and understanding she deserves, that we all deserve.
Click here to read Genna’s story!
Linda Rose-Krasnor
Chair, Board of Directors, PPA
Linda Rose Krasnor is currently a Professor Emeritus at Brock University, which is located in southern Ontario, Canada. She is a developmental psychologist, with particular research interests in social development and youth engagement. In addition to her teaching and research responsibilities, Linda served as President of the Brock faculty union and was active in the University Senate, serving terms as Chair of the Senate’s Governance and the Planning, Priorities, and Budget Advisory committees. Since becoming involved in the Pheo Para Alliance, Linda has been part of the peer support initiative, helping to develop the peer support training module and facilitating the monthly peer support calls.
Although asymptomatic, in 2009 Linda was assessed for pheocromocytoma/paragangliomas following the diagnosis of multiple paraganglomia in three close family members. Linda’s testing indicated bilateral neck paragangliomas, which subsequently were determined to be glomus vagale tumors. One was been surgically removed in 2016, with accompanying vagal nerve damage resulting in a paralyzed vocal cord and Horner’s Syndrome. With further surgery and extended speech therapy, Linda’s voice has recovered and she is being monitored yearly for growth in the remaining tumor. Linda and her family have the SDHD mutation.
In her role as a Board member, Linda is looking forward to helping advance the important and much needed educational, support, and empowerment functions of PPA and to strengthen its critical role in promoting research into prevention, diagnosis, and treatment. She is specifically interested in increasing our understanding of the socio-emotional implications of living with pheo/para, especially for children and youth.
Linda received her B.A. in psychology from Boston University and her M.A.Sc. and Ph.D. in developmental psychology from the University of Waterloo. In addition to her work with PPA, Linda volunteers as a leader of adult and children’s bereavement groups for Hospice Niagara.
Sara Spearey
Member, Board of Directors, CNETS
Sara is from Edmonton, Alberta, Canada and she is a patient living with metastatic pheochromocytoma. She is currently on the Welireg clinical trial for the drug called Belzutifan.
She has her Master’s degree in Urban and Regional planning and prior to the discovery of my first pheochromocytoma, she worked in planning for over 25 years in both the public and private sectors.
She now dedicates lots of her time to CNETS as a Member of the Board of Directors and the pheo para community as a patient advocate. We are so happy she is joining us here today to share her wisdom and experience.
Erqi Pollom
Radiation Oncology
Dr. Pollom is the Sue and Bob McCollum Professor and Vice Chair of Clinical Operations in the Department of Radiation Oncology and Professor by courtesy, in the Department of Neurosurgery. She is an active clinician scientist specializing in the treatment of central nervous system and gastrointestinal cancers and has led investigator-initiated clinical trials in advancing multidisciplinary therapeutic approaches to improve patient-centered outcomes for rectal cancer and spine metastases. She has authored more than 150 peer-reviewed publications in impactful scientific journals including Journal of Clinical Oncology, Journal of the National Cancer Institute, Cancer, Radiology, Neurosurgery, and International Journal of Radiation Oncology, Biology, and Physics. She also serves as an editor at her specialty journals including Advances in Radiation Oncology and International Journal of Radiation, Biology, Physics.
Roderick Clifton-Bligh, BSC MB FRACP PhD FFSc
Endocrinology
Associate Professor Roderick Clifton-Bligh is Head of the Department of Endocrinology at Royal North Shore Hospital, and conjoint associate professor in Medicine at the University of Sydney. He completed a PhD in the genetics of thyroid disorders at the University of Cambridge. He now supervises dual research groups, one of which focuses on the genetics of endocrine neoplasms, and the other on metabolic bone disease. The Cancer Genetics Unit studies the molecular bases of thyroid cancer, phaechromocytoma/paraganglioma syndromes, adrenal cancer, and pituitary neoplasms. The Metabolic Bone Research Unit studies calcium-sensing receptor gene mutations and FGF23 biology. His scope of clinical practice remains broad. He has co-supervised 8 completed PhDs, including five Endocrinologists. He maintains a strong involvement in teaching and mentoring young physicians.
