An Agent of Change is a person who promotes and enables change to happen within.
This month, we will honor OUR Agents of Change, volunteers who have dedicated countless hours to moving our mission forward.
Dr. Justin Annes
We honor Dr. Justin Annes, Associate Professor Medicine in Endocrinology at Stanford. Dr. Annes specializes in the treatment of hereditary endocrine disorders. He developed the Stanford Endocrine Genetics Clinic in 2012 which is part of the interdisciplinary Stanford Hypertension Center and Stanford Neuroendocrine Tumor Program. As part of his tenure on the Medical Advisory Board, he has presented on various pheo para topics including COVID and genetics. Dr. Annes has a talent for explaining complicated topics in an easy-to-understand manner to patients and caregivers. We salute Dr. Justin Annes, our Agent of Change.
Matthew was first diagnosed at the age of 25. Since that time, 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. For the past two years, Matthew has served as the Alliance’s President, leading the merger between two pheo para organizations, resulting in one united organization dedicated to research and patient advocacy. Matthew lives by the motto “seven times down, eight times up.” We salute Matthew, our Agent of Change.
Dr. Rory Clifton-Bligh
We honor Dr. Rory Clifton-Bligh, Associate Professor, Head of the Department of Endocrinology at Royal North Short Hospital and conjoin Assoc. Prof. at the University of Sydney. He now supervises dual research groups, one of which focuses on the genetics of endocrine neoplasms, and the other on metabolic bone disease. He maintains a strong involvement in teaching and mentoring young physicians. As part of his tenure on the Medical Advisory Board, he provided guidance on the Center of Excellence program and presented numerous research updates. Many patients find his calm demeanor along with his pheo para experience comforting during a time of severe stress. We salute Dr. Clifton-Bligh, our Agent of Change.
Emily has served on the Board of Directors since 2007. She plays an active role in multiple community initiatives, but she has made the advancement of pheochromocytoma research a primary objective. During her tenure, the Alliance has funded over $2 million in pheo para research. As both the wife and mother of pheochromocytoma patients, Emily understands the far-reaching effects of this disease. Emily represents the community as a caregiver warrior, her stamina and dedication unrivaled. We salute Emily, our Agent of Change.
We honor Facebook fundraisers. Over $10,000 has been raised this year by thirty members of our Facebook community! From those who raised $10 to those that raised $2,800 – THANK YOU! Every penny goes towards supporting our mission because Facebook doesn’t charge any fees. There are too many Facebook fundraisers to thank here, but you know who you are! (If you want to create a Facebook fundraiser, you can do so here https://www.facebook.com/fund/pheopara/).
Dr. Lauren Fishbein
We honor Dr. Lauren Fishbein, Associate Professor in Endocrinology at University of Colorado with a secondary appointment in the Division of Biomedical Informatics and Personalized Medicine. Her research and clinical interests are in neuroendocrine tumor genetics with a special focus on pheochromocytomas and paragangliomas. She has served and continues to serve on committees for the Endocrine Society and the North American Neuroendocrine Tumor Society, in addition to her role on the Pheo Para Alliance Medical Advisory Board. She has provided the Alliance with guidance on the Pheo Para Center of Excellence program and patient education materials, in addition to her presentations on genetics and imaging. Dr. Fishbein is focused on educating patients on their illness and engaging them as partners in their care. We salute Dr. Lauren Fishbein, our Agent of Change.
As Betsy likes to say, she spent twenty years raising children and then thirty years raising money and volunteering for non-profit organizations. A childhood friend of Betsy’s has the disease, and her commitment to finding new treatments and a cure is palpable. In addition to her financial support of the Alliance, her expertise in fundraising and the nonprofit landscape have guided the Alliance throughout its path to build a stronger organization. We salute Betsy, our Agent of Change.
Dr. Camilo Jimenez
We honor Dr. Camilo Jimenez, 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. As the most recent addition to the Medical Advisory Board in September, Dr. Jimenez has already demonstrated his commitment to our mission through a webinar presentation on Manifestations of Pheo Para, and his participation in our inaugural Awareness Week. We salute Dr. Camilo Jimenez, our Agent of Change.
We honor the Kelly Family, our Care Kit volunteers. Our Care Kits provide a little slice of comfort and much-needed education and guidance to our newly diagnosed community. They send out the care kits on their own dime, and Courtney includes some goodies a heart-felt letter to each recipient letting them know they are not alone.
Dr. Jacque Lenders
We honor Jacque Lenders, MD PhD FRCP of the Netherlands. In Nijmegen, the Netherlands he was one of the founders of the Radboud Adrenal Center. Together with Prof. Graeme Eisenhofer, they developed an assay for measurements of plasma free metanephrines as a diagnostic test for pheochromocytoma. He also 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. He has contributed significantly on various patient education materials, the development of the Center of Excellence program and held a webinar on diagnostics. Most recently, Dr. Lenders was appointed as the Chair of the Medical Advisory Board. We salute Dr. Jacque Lenders, our Agent of Change.
Dr. Karel Pacak
We honor Dr. Karel Pacak, Senior Investigator on the Section on Medical Neuroendocrinology at the NICHD where he heads the pheo para center, whose NIH research protocol focuses on the genetics, diagnosis, localization, and surgical and interventional radiological treatment of pheochromocytoma and paraganglioma. Dr. Pacak has been with the NIH for over 20 years. Dr. Pacak established the International Symposia on Pheochromocytoma, has received numerous awards and has authored more than 305 scientific peer-reviewed articles, 98 book chapters, and 5 books. Dr. Pacak has contributed his time and dedication to the Alliance in various ways, including a metastatic webinar, COVID webinar, presenting Grand Rounds at the International Pheo Para Conference, and is always gracious with his time and expertise. We salute Dr. Karel Pacak, our Agent of Change.
Pheo Para Phriday Patients & Caregivers
We honor our Pheo Para Phriday Patients & Caregivers. Over 40 of you shared your personal pheo and para stories through Pheo Para Phriday this year. This social media campaign continues to be a great source of comfort and solace for countless patients and caregivers throughout their journey. Sharing your story was easy for some of you, very difficult for others. Regardless, each and every story is appreciated by our community.
Social Media Volunteers
We honor our Social Media Volunteers. Because we are a rare disease, social media connects us in so many ways. Love it or hate it, social media has bridged the gap and made us all feel not so alone. Shonna, Catherine and Caitlin have recently begun to manage Twitter (Shonna) and Instagram (Caitlin) accounts and the Pheo Para Phriday campaign (Catherine). Each of them have lent their voice to connect us and strengthen our sense of community.
Robert has served on the Board of Directors for over a decade. Robert’s 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, and has been a patient there for the past 32 years. As a long-time survivor, his fighting spirit has helped continue to move the mission forward by sharing his story with donors and patients and engaging with researchers and clinicians to improve care. We salute, Robert, our Agent of Change.
Allen was diagnosed with sporadic metastatic paraganglioma in October 2006 and was appointed to the Board of the Pheo Para Alliance in 2009. Allen is from Belfast, and he serves as a pillar of patient advocacy for the global neuroendocrine tumor community. Over the years, he has provided support to countless fellow patients, and worked with the foremost researchers and clinicians to improve health outcomes. We salute Allen, our Agent of Change.