meet our team!
Board of Directors
Matthew is the Program and Events Coordinator for the Upstate Cancer Center. Having started as a public school teacher Matthew is determined to bring awareness and support to those who share in his disease and those who have yet to learn about it. He was first diagnosed with bi-lateral carotid paragangliomas asymptomatic at the age of 25 after insisting on testing due to a familial history.
During the course of treatment a third tumor was discovered behind the ear near the brain. Both carotid tumors were successfully removed and the brain tumor was treated both surgically and with Gamma Knife radiation. A few years later elevated heart rate and palpitations lead to the discovery of pheos on both adrenal glands and a heart paraganglioma. All three were treated surgically at the NIH and Matthew is currently tumor free. There have been nine documented cases of this disease in Matthew’s family including his father, who lost the battle due to complications with a heart paraganglioma in 2009, and his brother.
Matthew has long lived by the motto “Seven times down, eight times up” and hopes to help relay that to the fight for all pheo para related diseases and the efforts of the Pheo Para Alliance.
After graduating Hofstra law school in 1982, Mr. Spelke began his legal career with a law firm in Long Island, New York litigating transportation issues. In 1983, he joined the United States Department of Justice with the Civil Rights Division, Special Litigation Section. There, Mr. Spelke protected the federal constitutional rights of institutionalized individuals. This included those incarcerated in state institutions as well as patients housed in state mental health facilities. In 1987, Mr. Spelke joined the United States Attorney’s Office for the District of Columbia where he prosecuted a variety of local and federal crimes committed in the District of Columbia. He served in the Appellate Division, Misdemeanor Trial, Felony Trial, Grand Jury, Violent Crimes, Narcotics Section and the Homicide Unit. He completed well over fifty jury trials, twenty non-jury trials and countless motion hearings/arguments. In 1997, Mr. Spelke accepted a position with the Drug Enforcement Administration (DEA) where he was appointed chief of the Domestic Criminal Law Section. This section was responsible for providing legal advice to DEA Special Agents, Chief Counsel of DEA, United State’s Attorney’s Offices and other key Department of Justice components on current law, DEA operations, policy and procedures. In January of 2003, Mr. Spelke took a position with the Narcotics and Dangerous Drug Section, Criminal Division, United States Department of Justice. In this position, Mr. Spelke investigated and prosecuted high-level commanders and those in control of international drug organizations. He would work with both national and international law enforcement to break criminal syndicates that were equally coordinated, international in scope, violent and well financed. In 2011, Mr. Spelke left the federal government and started his own law firm in Washington, DC that focuses on foreign nationals accused of crimes in the United States.
Mr. Spelke is no stranger to the goals of the Pheo Para Alliance. His first tumor appeared in 1975, when he was just 18 years old. After surgeries for a tumor in his stomach, a carotid body tumor, a pheo in his adrenal gland, radiation for a glomus jugulare tumor, Mr. Spelke was accepted at NIH in 1988. He underwent chemotherapy and has been a patient for the past 26 years. In this time, Mr. Spelke has seen the number of patients, research and treatment for our disease at NIH grow exponentially. Mr. Spelke has expressed his gratitude for the opportunity to serve this worthy cause.
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.
Salley has worked on Capitol Hill for over 10 years working to develop and execute strategic initiatives related to legislative and organizational operations and communications. Prior to her work on the Hill, she spent 6 years working at the National Association of Broadcasters where she worked on the conception and management of national consumer, public policy, and grassroots campaigns. Salleyhas been diagnosed with the familial SDHB genetic mutation associated with paragangliomas. She lives in Washington, D.C. with her husband and two children.
Taylor has been working in animation and visual effects for almost the last decade and a half. He’s worked in NYC, Chicago, Los Angeles and now Atlanta, on some of the largest projects for the largest entertainment companies in the world. In 2014, his dream career was derailed when he discovered a lump on his neck, which turned out to be a carotid body tumor. The surgical resection led to paralysis of his vocal cords, which was devastating for the lifelong musician. This was followed by an open heart surgery to remove a paraganglioma behind his heart, and radiation therapy on an additional tumor at the base of his skull. A few surgeries and some years later, Taylor’s voice is back, his tumor is stable, he’s pursuing music again and his career has reached all new heights. Taylor is currently working as a Senior Compositor for multiple television shows and major feature films, and is also now a television writer. He’s excited to bring his creativity to the Pheo Para Alliance, hoping to apply his design and storytelling chops to best connect with those that need us. As a patient who was brought to his lowest, both physically and emotionally, because of this disease, Taylor is most looking forward to serving as a beacon of hope for patients who are still struggling in their pheo para journey.
Emily Collins joined the PheoPara Alliance Board of Directors in 2007 to further her commitment and dedication towards achieving increased awareness and research of Pheochromocytoma and Paraganglioma. In addition to her service on the PheoPara Alliance Board, Ms. Collins has long advocated and participated on behalf of various public interest organizations in the Washington, DC area. While Ms. Collins plays an active role in multiple community initiatives, she has made the advancement of Pheochromocytoma research a primary objective. As both the wife and mother of Pheochromocytoma patients, Ms. Collins understands the far reaching effects of this disease and pledges to work with the Board towards achieving a national awareness of this disease and eventually a cure. Ms. Collins received her Bachelor’s degree from Chestnut Hill College in Philadelphia and resides in Washington, DC. She is married and has three children.
Elizabeth (Betsy) Herold
As Betsy likes to say, she spent twenty years raising children and then thirty years raising money for and serving on boards and committees of non-profit organizations.
Some of the many organizations she has fundraised for include the Huntington Hospital in Huntington, New York and the Martin Health System in Stuart, Florida. She has chaired several major fundraisers, most recently the 2016 Chrysanthemum Ball in Stuart, Florida which raised over $650,000.
Named to the National Register of Historic Places, the Lyric Theatre in Stuart, Florida has served the community of Stuart since 1926. As a member of the Lyric Theatre’s Board of Directors, Betsy raised funds for and helped to implement major renovations in 2014. Since 1996, Molly’s House in Stuart, Florida has provided a home away from home for more than 17,000 while they or a loved one were receiving medical treatment. Besides being a long time supporter of Molly’s House, Betsy has served on the Board for three years and is currently serving as Vice President of the Board.
In addition to the Board and fundraising experience Betsy brings to the Alliance, she also brings passion as a dear friend of hers from childhood and his family have the disease. Betsy has seen what this disease can do but she has also seen the results brought about by research and education and she looks forward to the opportunity to see this continue and ultimately find a cure.
My name is Mark Pilkenton. I’m an executive in a managed IT organization. I was pulled into the world of “rare cancers” with my own diagnosis of paraganglioma in March 2018, just days after my 39th birthday.
Following surgery removing the tumor from my chest and after a year of healing, I wanted to become involved in a community with which I now belonged. After reaching out to the PheoPara Alliance to learn how to become involved, I was asked to consider being a part of the Department of Defense Congressionally Directed Medical Research Programs (CDMRP) as a consumer reviewer. After consideration, I decided to jump in head first. With the nomination letter and application completed, I was interviewed and accepted to fill the role of a survivor member on the review panel. I, alongside, researchers and other rare cancer advocates, were to review and provide feedback on grant applications requesting funding for rare cancer research. With that, I was immediately given approximately two months to review several research funding requests and formulate my understandings and potential impact on the community at large to then share with various researchers, doctors and other scientists to discuss the proposed research. Though I learned quickly my understanding pales drastically in comparison with others on the board, my goal was to provide input from someone who has understood what staring into the face of hopelessness felt like. My input may not have come from a rich understanding of medical science, but feedback wrapped in the hope that ideas to overcome rare cancers offered a tremendous amount of hope for the future for all those impacted by rare cancer.
My time volunteering with this review panel has confirmed that I made the right career choice, primarily, but has also granted me insight into the world of medical research and how things get done. Grant requests for medical research go through an arduous process examining every detail major and minor. The individuals involved from conceptual creation to drafting, review to implementation, are interested in solutions and curing rare cancers. This offers hope for a future relieved of certain unknowns we have today. As a patient, I now more clearly understand that researchers are working very hard on finding answers to improve the lives of those living with rare cancer. I look forward to more experiences with the CDMRP and am excited to represent my community of survivors with paragangliomas and other rare cancers.
In the spring of 2020 I joined the Board of Directors for Pheo Para Alliance.
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.
E. Allen Wilson
Allen Wilson is a business graduate with over 20 years experience in both the financial and manufacturing sectors. He is Managing Director of the Wilson Group of Companies, based in Belfast, N. Ireland since 1998, which remains on an expansionary path within the chemical manufacturing and specialist recycling markets throughout Ireland and Europe. An avid sportsman, qualified instructor and Hatha yoga tutor, Allen has a zest for life and energy that he is keen to put to good use. He was diagnosed with sporadic metastatic paraganglioma in October 2006 and was appointed to the Board of the Pheo Para Alliance in 2009.
Allen is passionate about using his experience, networking and managerial skills to increase awareness of the work of the all forms of patient support through Pheo Para Patient Initiative. His emphasis is to reach out to patients throughout the world by promoting the pursuit of earlier and better detection and diagnosis of Pheochromocytoma whilst helping to develop improved treatments and ultimately pursue a cure for this rare and orphan group of diseases.
Medical Advisory Board
Karel Pacak, DSc, MD, PhD
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
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
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.
Lauren Fishbein, MD PhD MTR
Lauren Fishbein, MD, PhD, MTR is an Assistant Professor in Medicine at the University of Colorado School of Medicine in the Division of Endocrinology, Metabolism and Diabetes with a secondary appointment in the Division of Biomedical Informatics and Personalized Medicine. She received her bachelor’s degree in Biochemistry from Vassar College and earned her MD, PhD degree from the University of Florida with a PhD in Molecular Genetics. She completed her Internal Medicine Residency at Harvard’s Beth Israel Deaconess Medical Center in Boston and her Endocrinology Fellowship at the University of Pennsylvania where she also completed a Master’s in Translational Research. Her research and clinical interests are in neuroendocrine tumor genetics with a special focus on pheochromocytomas and paragangliomas. Dr. Fishbein has a strong interest in personalized medicine including understanding the impacts and implications of germline predisposition genetics, as well as understanding tumor development and transformation to aggressive and metastatic disease. Among her contributions to the field, she was the first to report the association between somatic ATRX mutations and aggressive pheochromocytoma, and she was the data coordinator for The Cancer Genome Atlas (TCGA) integrative genomics study on pheochromocytoma and paraganglioma which revealed potential new markers for aggressive disease. She has served and continues to serve on committees for the Endocrine Society and the North American Neuroendocrine Tumor Society.
Jacques Lenders, MD PhD FRCP
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.
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. Stephanie’s experience in patient advocacy, education, and fundraising is instrumental in growing Pheo Para Alliance to support the patient community and find better treatments and a cure for PPGL.
She lives in San Diego county with her husband and two girls. She enjoys hiking and the outdoors.