Founders and Governing Board
Marianne has over 25 years of experience in knowledge management and translation. During her career with the United Nations, she developed knowledge products and communities of practice in the areas of healthcare, social protection and public policy to facilitate information dissemination to internal and external partners and stakeholders.
Since leaving the United Nations in 2010, Marianne has provided research and management consulting services to various healthcare organizations to assist them with information technology, performance assessment, strategic planning, business modeling, and policy development.
Marianne holds a PhD in Health Information Science from the University of Victoria, British Columbia; a Degree of Specialist in Health Policy from the George Washington University; and a Master’s in Health Administration from the Catholic University of Louvain, Belgium.
Marianne developed mild hypertension in the late nineties. Following a traumatic event in 2007, she experienced a hypertension crisis that triggered screening for primary aldosteronism. Preparation for testing was disregarded, and as a result, the disease was erroneously ruled out. Four years later, she started to exhibit overt signs of primary aldosteronism which her physicians were still unable to recognize. Only when additional antihypertensives failed to control her blood pressure (i.e., six years later) was the likelihood of primary aldosteronism entertained again. Due to unavailability of adequate and timely care where she lives, Marianne had to travel to the U.S. National Institutes of Health for diagnosis. Marianne has bilateral hyperplasia, and does not tolerate mineralocorticoid blockers. She manages the condition with dietary sodium restriction and a calcium channel blocker. She also leverages the potent anti-inflammatory properties of Carvedilol. This regimen is however ineffective at preventing disease progression.
Mike is a technologist and entrepreneur who has also had a lifelong interest in improving healthcare through education, science, and technology. During his 20-year career at Intel, he was product manager for the world’s first 32-bit microprocessors and helped make Intel one of the world’s most recognizable brands. After spinning off a company from Intel, Mike went on to lead several startups in fields as diverse as online development, nonvolatile memories, high speed encryption, electronic discovery, and smart energy. He holds multiple patents.
Mike did his undergraduate work in biology, psychology, and electrical engineering at Rensselaer Polytechnic Institute in Troy, NY, and his master’s work in business at PSU in Portland. Through a fellowship from The Hastings Center, he studied medical ethics at the Texas Medical Center in Houston. Mike has been a leader in several non-profit educational and patient advocacy organizations including organ donation, mental health, AIDS education, children with special needs, and suicide prevention.
Mike was diagnosed with hypertension and hypokalemia when he was still in his late 30’s, but no one thought to test for primary aldosteronism despite the clear signs. It was not until some 20 years later, when both his blood pressure and potassium became difficult to control, that he pressed his physician to test for PA after reading about it in a paper on resistant hypertension. In 2019, he had an adrenalectomy to remove the adenoma that was secreting both excess aldosterone and cortisol. Mike has completely recovered from PA, but struggles with adrenal insufficiency. He lives in Phoenix.
Trained as a respiratory care practitioner, Rene started his career in critical care and emergency settings where he practiced for over 10 years providing adult and pediatric care. Rene then worked with a team that pioneered a multi-disciplinary program aimed at bringing ventilator-dependent children home. The program grew to over 200+ patients who could be cared for in the home setting versus hospitals or step down units dramatically improving the quality of lives of patients and their families while lowering the healthcare cost.
After overseeing the clinical management of the homecare respiratory team for 10 years, he took on the additional responsibilities of managing the other clinical departments of nursing, pharmacy, and patient services. He later took on the roles of general manager, area operations manager and eventually area manager which oversaw all previous departments and added sales and marketing responsibilities for most of southern California. He is now retired and happily living in the Los Angeles area.
Rene developed PA over the last 10 years, and despite typical symptoms such as incidents of hypokalemia, high blood pressure at a young age, and needing three medications to reduce his blood pressure, he wasn’t diagnosed until 2017. Although he lives in Los Angeles which is a major US metropolitan area, and was seen at several highly regarded hospital systems/teaching institutions, he received multiple conflicting opinions about his condition and treatment. In 2019, Rene participated in a research study at the National Institutes of Health where his PA diagnosis was finally confirmed. He is currently treating the condition medically while exploring other treatment options which include a potential ablation of his adenoma or an adrenalectomy.
Debbie has over 35 years of experience as an accounting professional and business leader. Her work experience beyond accounting responsibilities has involved employee development, systems implementation work, and litigation support. After retiring from a Fortune 500 company, she now works part-time as a consultant and volunteer. Debbie holds a bachelor’s of business administration degree in accounting from Texas A&M University and is a Certified Public Accountant. She currently resides in the Oklahoma City area.
Debbie developed hypertension over ten years ago that progressed to become more severe, with multiple medications not adequately controlling it, as well as other unexplained symptoms. It was not until her potassium level dropped below the normal range that primary aldosteronism was suspected and finally diagnosed in 2018. Debbie is now considering AVS and a possible surgical solution. She currently treats the condition medically, accompanied by a sodium restricted diet.