OUR PEOPLE
meet our team!
Board of Directors
Linda Rose-Krasnor, MASc, PhD
Chair
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.
Michael L. Campbell
Vice-Chair
Michael L. Campbell is the Chief Operating Officer of the Mark Twain House & Museum in Hartford, CT. Mark Twain wrote most of his well-known works from this house and spent more years there than he did in any other place. Michael helps to keep the legacy of Mark Twain and his family alive by assisting 80 employees. He has served the nonprofit community in the Greater Hartford area for nearly 40 years. He was the Executive Director of SummerWind Performing Arts Center in Windsor, CT and was Chief of Staff for the Girl Scouts of Connecticut. He also served as National Development Director for the US Naval Sea Cadet Corps in Arlington, VA, responsible for all advancement efforts nationwide for this youth development organization. One of Michael’s favorite roles was Executive Director of the Hartford Children’s Theatre. His duties there included development, finance, operations and the management of all programs that led the organization to receive the New England Theatre Conference’s award for best youth theatre production in New England. Michael was a fixture at the Producing Guild, a premier non-equity theatre for over 15 years as Business Manager, Production Manager, Actor, Singer and Production Assistant. He has served on many local, national, and international boards with experience in all areas of nonprofit governance and management.
Michael was diagnosed with a pheochromocytoma in the summer of 2021 and spent over a month in the hospital at the University of Connecticut Health Center. His surgery was successful and he vowed to give back to community. Michael has traveled to over 50 countries, is a former mountaineer and has served in uniform as a Lieutenant Commander acting as a mentor for the US Naval Sea Cadet Corps. With his wife Rie and their three cats Shiraz, Zambezi and Colaba he lives in Canton, CT.
Lisa Anderson
Treasurer
Lisa Anderson is a “mother on a mission” determined to help others avoid a long and excruciating journey toward a pheochromocytoma or paraganglioma diagnosis. After seeking answers for nearly 5 years that would explain her college-aged son’s debilitating symptoms (headaches, blood pressure swings, irregular heartrate, sweating, nausea, vomiting and extreme panic/anxiety), a suspicion of a pheochromocytoma tumor was finally discovered through incidental testing by a gastroenterologist who ordered an ultrasound to investigate a potential gallbladder issue. The time from diagnosis to tumor removal surgery became a whirlwind of searching PubMed articles about pheo, coordinating with the surgical team, cross-checking every well-intended medication, and caring for her precariously sick son who required 24-hour hospital care until the surgery date.
After learning a blood and/or urine test to check metanephrine levels when the symptoms first appeared could have signaled this adrenal tumor, Lisa has made it her mission to look for ways to raise awareness about this disease with health care providers. She has found a place with Pheo Para Alliance (PPA) to channel her energies. Throughout her more than 30-year career at the Fred Hutchingson Cancer Research Center in Seattle, WA, Lisa has had the opportunity to cultivate relationships with physicians, scientists, residents, fellows, administrators, and volunteers with whom she worked collaboratively to support cancer research with special emphasis on patient needs. She hopes to use her experience in health care administration and knowledge of health care systems to access an array of medical professionals and organizations to remind them to “think about pheochromocytoma and paraganglioma” so that others will not have to endure an unnecessary and potentially dangerous delay in diagnosis.
Lisa holds a BA in Spanish from the University of Washington, and a Masters in Teaching from Western Governor’s University. When she’s not happily volunteering with the PPA, she loves substitute teaching at the local elementary school, road trips, and playing golf with her husband and two sons.
Teena Price, BSc, BVMS, DACVP
Secretary
Teena is a Veterinary Pathologist at Veterinary Diagnostics (VDx), in Davis, CA. She works in both the diagnostic pathology service and preclinical research. Teena graduated as a Veterinarian from Murdoch University in Western Australia in 1994, and spent the next 8-10 years working as a clinical veterinarian before making the leap into the pathology field, which she loves. Teena grew up in Tasmania, Australia, and moved to the US in 2004 to complete her pathology residency at UC Davis, fell in love with an American, and never left Davis. She has two young boys, a dog, and two cats, and loves hiking, and being outdoors with her family. Teena first came across the Pheo Para Troopers after her Mum was diagnosed with an abdominal paraganglioma in 2015. Her Mum was subsequently found to have a SDHB mutation, that Teena’s sister, and three of her nieces, and nephew also have. After what would have been her Mum’s 70th birthday in 2021 (she passed away in 2019 from a brain tumor), Teena decided to become more involved in the Pheo Para Alliance. She and her youngest son, Elias, started fundraising in Spring 2021, and Elias, who competes in Ninja Warrior, took it upon himself to “train” Teena to become a Ninja Warrior too! Apparently, you can teach old dogs new tricks. It’s been an amazing journey, which culminated in the Inaugural Pheo Para Ninja Warrior Competition that was held in September 2021 in California. Together they raised just shy of $10,000, and are looking forward to continuing their awareness and fundraising campaign into 2022 and beyond.
Eli Soto
Member
Eli has been working in medical sales for 20 years in the US as well as internationally. Currently, he is a Vice President of an infertility company based in Sweden for North and South America. He has a BS in Biochemistry and an MBA and previously did research in fetal alcohol syndrome, breast cancer and polymer chemistry. In 2013, he was diagnosed with Reversible Cerebral Vasoconstriction Syndrome (RCVS) after experiencing his first of many cerebral adrenal events. Physicians were unknowingly treating the symptoms of a pheochromocytoma instead of the underlying disease itself. Like many other patients, the symptom management was unsuccessful. Eli continued to experience cerebral events throughout the years. In 2018, while training at a gym, the cerebral events occured in a much higher frequency to where he needed immediate attention to his illness. A friend suggested searching PubMed and finding who published the latest paper on RCVS and flying to wherever that physician was for an evaluation. Serendipitously, the latest research was a physician in Denver, 2 miles from his business. Even more fortuitous, this neurologist had already diagnosed a pheochromocytoma in his lifetime and suspected a pheo on the first visit. Coincidence or Providence? Eli is estimated to have had a pheo for 10+ years slowly growing inside him. It was ultimately characterized as a Stage III Metastatic Pheochromocytoma. Having previously survived childhood Acute Lymphatic Leukemia, Eli knew the kind of determination it would take to beat this. It took two complex surgeries to remove it all. He is grateful for the team of physicians and healthcare providers at the University of CO that helped him finally achieve remission status in 2019. Without them, and the strong support of his sister and close friends, he would not be able to be the father that his only son deserves today. Eli now hopes to help others like him find the support and resources they need to in order to treat their pheo or para illness.
Karel Pacak, DSc, MD, PhD
Chair, Medical Advisory Board & Member, Board of Directors
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.
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.
Shonna Snyder, PhD
Member
Shonna was diagnosed with a bladder paraganglioma in 2019 after many years of extreme symptoms in which doctors dismissed as such things as stress, fatigue, panic attacks or POTS. Given her research and health education background, she knew that these diagnoses were not accurate and so she continued to push for further testing. She visited multiple doctors who did not believe her when she suggested that she had a pheo/para in her bladder and so she struggled to get the CT that she requested. She finally had a doctor truly listen and order the CT scan she needed in July of 2019 after five trips to the ER in one week. Her surgery took place in November of 2019 at the NIH.
Heather Steinman, PhD, MBA
Chair, Research Advisory Board & Member, Board of Directors
Heather Steinman, Ph.D., MBA, is Vice President for Business Development and Executive Director of Technology Transfer at The Wistar Institute, the nation’s first independent research institution devoted solely to biomedical science and a world leader in cancer, immunology, virology and infectious disease research.
Dr. Steinman brings more than 18 years of experience in technology transfer and commercialization of early stage-life science discoveries. She previously served as Director of the Penn Center for Innovation, Perelman School of Medicine Office at the University of Pennsylvania. There, she played an essential role in supporting Penn’s UPstart program. Before that, Dr. Steinman spent more than a decade in roles of increasing responsibility as a technology licensing professional in the Office of Technology Management at the University of Massachusetts Medical School.
Dr. Steinman holds a doctorate in biomedical sciences from the University of Massachusetts Medical School and an MBA from the university’s Isenberg School of Management. She graduated Summa Cum Laude from Baldwin-Wallace College with dual degrees in biology and psychology in the honors program.
Dr. Steinman is passionate about bringing her own experience with cancer research to find answers for pheochromocytoma and paraganglioma patients, such as her husband.
Medical Advisory Board
Karel Pacak, DSc, MD, PhD
Chair, Medical Advisory Board & Member, Board of Directors
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.
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.
Justin Annes, MD PhD
Member
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).
Roderick Clifton-Bligh, BSC MB FRACP PhD FFSc
Member
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.
Jaydira Del Rivero, MD
Member
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.
Lauren Fishbein, MD PhD MTR
Member
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, MD
Member
Dr. Jimenez is a Professor of Endocrine Neoplasia and Hormonal Disorders at the MD Anderson Cancer Center in Houston, TX. He 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 malignant pheo and paras. His observations led to the development of prospective multi-institutional and international clinical trials. Dr. Jimenez also characterized inherent complications related to excessive hormonal secretion and tumor burden distinctive of this disease.
Electron Kebebew, MD, FACS
Member
Dr. Kebebew is Professor of Surgery, Chief of the Division of General Surgery & The Harry A. Oberhelman Jr. & Mark L. Welton Professor at Stanford University, School of Medicine. He received his bachelor’s degree from the University of California, Los Angeles in Chemical Engineering. He completed his medical training, surgical residency & NCI T32 fellowship in Cancer Biology at the University of California, San Francisco. He joined the surgical faculty at UCSF in 2002. In 2009, he was recruited to the National Cancer Institute where he established an integrated clinical & research program in Endocrine Oncology before being recruited to Stanford School of Medicine in 2018.
He is an internationally recognized expert in Endocrine Oncology & Surgery. He has performed more than three thousand operations on the adrenal, parathyroid & thyroid glands & for neuroendocrine tumors of the gastrointestinal tract & pancreas. Dr. Kebebew has published over 400 articles, chapters & textbooks & serves on the editorial board & as a reviewer for 54 biomedical journals.
His translational & clinical investigations have three main scientific goals: to develop effective therapies for fatal, rare & neglected endocrine cancers, to develop new methods, strategies & technologies for improving the diagnosis & treatment of endocrine neoplasms & the prognostication of endocrine cancers & to develop methods for precision treatment of endocrine tumors based on tumor genetics & advanced imaging methods.
Jacques Lenders, MD PhD FRCP
Member
Chair, Medical Advisory Board
Jacques Lenders received his MD Degree in 1975 at the Radboud University in Nijmegen, The Netherlands. After his training as internist he served as staff member of the Department of General Internal Medicine of the Radboud University Medical Centre. He was deputy-chair of the department from 2005 until he retired at the end of 2012. Since 2008 he works also as a part-time affiliate staff member of the Department of Internal Medicine III, University Medical Center Gustav Carus, Dresden, Germany.
In 1988 he defended his thesis ‘Blood pressure and catecholamine reactivity to adrenergic stimulation in essential hypertension’. From 1-8-1991 to 31-12-1992 he worked as a visiting associate in the Clinical Neuroscience Branch of the NINDS at the NIH in Bethesda, USA, under supervision of Dr. I. Kopin. There he developed, together with Prof. Graeme Eisenhofer, an assay for measurements of plasma free metanephrines as a diagnostic test for pheochromocytoma. On his return to Nijmegen as staff member, he focused his research on diagnostic and clinical aspects of catecholamine-producing tumors. In Nijmegen he was one of the founders of the Radboud Adrenal Center. He initiated the Working Group on Endocrine Hypertension of the European Society of Hypertension and he is a member of the executive board of the Pheochromocytoma Research Support Organization. He has (co-)authored over 260 research articles, reviews and book chapters. Recently he served as chairman of the Pheochromocytoma/Paraganglioma Clinical Practice Guideline Task Force of The Endocrine Society.
Masha Livhits, MD
Member
Dr. Masha Livhits is an Endocrine Surgeon and Assistant Professor of Surgery at UCLA. She is the UCLA Endocrine Surgery Fellowship Director. An exceptional achiever since childhood, she attended college at the age of 12 through the highly competitive Early Entrance Program at California State University, Los Angeles. She then received her medical degree at Washington University School of Medicine in St. Louis and was awarded the prestigious Sarnoff Foundation genetics research grant.
Dr. Livhits completed her general surgery training and endocrine surgery fellowship at UCLA. She is certified by the American Board of Surgery and is a member of the American College of Surgeons. Dr. Livhits has published widely in the area of improving surgical outcomes and quality of care. She is dedicated to combining knowledge learned through research with her experience as a surgeon to deliver the best care to her patients. Her clinical and research interests include parathyroid disease, benign and malignant thyroid tumors, adrenal masses, and familial endocrine disorders. She helped to pioneer the new technique of single incision retroperitoneoscopic adrenalectomy in North America. She has an ongoing clinical trial to study molecular testing for thyroid nodules.
Neil Patel, MD
Member
Neil S. Patel, MD, is an Assistant Professor of Neurotology and Skull Base Surgery within the Division of Otolaryngology – Head and Neck Surgery at the University of Utah in Salt Lake City, Utah. Dr. Patel completed both his fellowship in otology/neurotology and skull base surgery and his residency training in otolaryngology – head and neck surgery at the Mayo Clinic in Rochester, Minnesota. One of his primary research interests is the management of head and neck paragangliomas, specifically glomus jugulare tumors. Several of his over 50 peer-reviewed publications are focused on outcomes following treatment of jugular paragangliomas. As a lateral skull base surgeon, he is actively involved in the multimodality treatment of skull base and neck paragangliomas as part of a multidisciplinary team at University of Utah, a Pheo Para Alliance Center of Excellence.
David Taïeb, MD, PhD
Member
David Taïeb (MD-PhD) is full professor of Nuclear Medicine at Aix Marseille university, France. He is member of the EANM Oncology & Theranostics Committee. He holds numerous research grants and is co-editor of 2 textbooks dedicated to Nuclear Endocrinology. He has over 240 peer-reviewed publications on PubMed. A major focus of his clinical research in collaboration with the NIH has been to improve disease characterization by molecular imaging of pheochromocytoma and paraganglioma (PPGL). In addition, he is actively involved in therapeutic nuclear medicine with a major focus on endocrine neoplasms. He is also affiliated to INSERM (French Institute of Health and Medical Research) with several on-going basic research projects on nanomedicine and nucleic acid therapeutics. More recently, he has coordinated the EANM Practice Guideline/SNMMI Procedure Standard 2019 for radionuclide imaging of PPGL. He is currently co-chair of the upcoming future clinical practice guidelines for patients harboring germline mutations in the SDHD and SDHB genes.
Staff
Stephanie Alband
Executive Director
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 illness has helped her better understand and successfully navigate the unique challenges faced by the rare disease community. She currently serves as a Member of the Board of Directors for the International Neuroendocrine Cancer Alliance (INCA).
She lives in San Diego county with her husband and two girls. She enjoys hiking and the outdoors.
Aimee Powell
Community Engagement Specialist
Aimee Powell rejoined the Pheo Para Alliance in May of 2022, and has been actively involved in the pheo/para community since her late mother’s paraganglioma diagnosis in February of 2014. Health issues experienced by generations of family members suggested the presence of an inherited syndrome, a suspicion confirmed later that year by genetic testing. Following the death of her brother John in 2015, she formed the Pheo Para Project to help amplify the message and reach of other organizations working to support pheo/para patients and researchers, and joined the board of directors for the Pheo Para Troopers the following year.
Aimee has worked in an administrative capacity with nonprofits since 2005, and has been a professional communicator for over 25 years. She has served as the Pheo Para Troopers Interim Executive Director, the Executive Director of the Pheo Para Alliance immediately following its merger with the Pheo Para Troopers, and as a member of the board of directors for SDH-Deficient Cancer Research Advocates. In addition, she sits on the Society for Nuclear Medicine and Molecular Imaging (SNMMI) Patient Advisory Board, and volunteers with the Los Angeles Carcinoid Neuroendocrine Tumor Society (LACNETS) as a NETConnect Mentor.
Aimee lives in Ventura, California, with her son and her border collie, Roxie.