Our Mission
The mission of the Foundation is to unite and support in any possible the patients of the genetic heart disease Hypertrophic Cardiomyopathy (abbreviated as HCM), located in the European Union, and their relatives by:
Our Vision
Our vision is to achieve a much better outcome of HCM in patients in the European Union, including:
We dream of the day when HCM will be a routinely treatable or even completely eradicated disease.
Our Team
Emil Tsenov
Founder and managing director
Emil lives and works in Vienna, Austria, and is an Austrian citizen of Bulgarian origin. He holds a BA in Business Administration (American University in Bulgaria), an MA in English Language and Literature (Sofia University) and an MBA from INSEAD. He is also studying for a doctorate and teaches courses in Marketing Management, International Marketing, Marketing Strategy, New Product Development and Innovation, etc. at American and Austrian universities. Emil has worked in different leadership Marketing and IT positions at major companies like Philips, Zurich Insurance and OMV as well as in start-ups. His experience covers diverse B2C and B2B industries like media, tobacco, consumer electronics and personal care, insurance, lubricants, education, and satellites. He currently runs the Marketing consultancy Optimus Consulting which deals with different strategic and operational Marketing problems.
In 1989 Emil was diagnosed with non-obstructive Hypertrophic Cardiomyopathy (HCM), a disease which took the life of his father at age 54. Since then Emil has been actively involved in different patient initiatives. He also led an European-wide HCM patient-centric project as a consultant for a pharmaceutical company and has a great knowledge of the European HCM patient organizations landscape, as well as of country-specific and EU regulations. He has also written the novel “The Green Tunnel” which has HCM as its main topic.
Emil speaks fluently Bulgarian, English and Russian and has an advanced knowledge of German. He is married with two daughters (27 and 22).
Bettina Bogner-Lipp
from Linz in Upper Austria. She is a married mother of a daughter and grandmother of two grandchildren. After an incomplete degree in art history she worked many years as an assistant of the management on the private sector. Since she studied Gerontology in Graz 2005-07 with a master upgrade 2014 she changed her career orientation to working for and with old people, especially those with dementia, as well in a daily care task routine in a retirement home as also in research and training. Her main task over the last few years has been telephone counselling concerning all matters of “age and violence”. She is employed with the Austrian association “Pro Senectute – Verein für das Alter”.
Bettina is a highly concerned HOCM patient. She was diagnosed in 2014 after a long path of uncertainty and suffering, though the heart condition is in the family. In 2015 she underwent an open heart surgery in Göttingen, Germany to remove a dislocated third papillary muscle and a lot of proliferating tissue. This turned out to be insufficient, so he had a re-myectomy in 2022 with a mitral valve repair and implementation of a pacemaker in Innsbruck, Austria.
Dr. Dimitar Ivanov
Bulgarian. He graduated in medicine in 2003 and since then has been working in the county hospital in his hometown of Pazardzhik. Dimitar has specialized in Anaesthesiology and Intensive care and is a full- time anesthesiologist in the 556 bed hospital covering a population area of 314 000 people. Since 2015 he has also been the head of the ICU department. He was diagnosed with obstructive HCM 15 years ago.
Francesca Musso
Francesca is Italian who was diagnosed with non-obstructive hypertrophic cardiomyopathy at the age of 24, even though she had always known that there was something wrong with her heart.
At the time she was graduating in physical education, and the news made her wonder if she was taking the right path. Still not taking the diagnosis that seriously, she went to Australia and then London to work and explore the world.
Back to Italy in 2019, where she now lives and works, she was strongly advised to implant an S-ICD as a precautionary measure due to the worsening of the disease. She accepted assuming that the device would never be needed.
Until it fired and saved her life.
After that she decided to start the Instagram page “livingwiththeS-icd” where she supports people with ICDs worldwide and maintains close correspondence with patients and their relatives facing similar problems and decisions.
Scientific Board
Prof. Iacopo Olivotto
Professor of Cardiovascular Medicine at the University of Florence and Head of Cardiology, Meyer Children’s Hospital, Florence, Italy. Over the last two decades, his main clinical and research interests have includes various aspects of cardiomyopathies, with special focus on hypertrophic cardiomyopathy (HCM), ranging from clinical predictors of disease progression and outcome, arrhythmias, medical and surgical management, advanced imaging and genetic studies, developmental, translational studies addressing cardiac myofilament contractility and cellular electrophysiology. Prof. Olivotto has been involved in drug development, design and execution of randomized studies in genetic cardiomyopathies. He has co-authored over 300 papers in international, peer-reviewed journals. Prof. Olivotto is a co-founder and board member of The Sarcomeric Human Cardiomyopathy Registry (Share) and ICON (International CardiomyOpathy Network).
Prof. Jolanda van der Velden
Chair of the Department of Physiology at the Amsterdam University Medical Center, and director of the Amsterdam Cardiovascular Sciences Institute. Her main research interest is the role of sarcomeric proteins in cardiac performance. As mutations in sarcomeric proteins are a frequent cause of heart disease, research on inherited cardiomyopathies is a central research line in Amsterdam UMC. Prof. van der Velden’s team at the Physiology department collaborates with clinical geneticists, cardiologists, cardiac surgeons and experts in in vivo cardiac imaging, enabling translational studies from bench to the patient. Their expertise includes functional studies at single cardiac muscle cell and multicellular level, and mitochondrial studies in patient samples obtained during cardiac surgery, and stem cell-derived heart models.
Dr. Niccolo’ Maurizi
Chief Resident in Cardiology at CHUV | Lausanne university. Prior to that, he worked as a Researcher at Università degli Studi di Firenze. He co-founded D-Heart, a startup for innovative cardiologic wearable concepts in 2015. He has authored and co-authored almost 100 scientific articles with concentration on HCM-related issues (sudden cardiac arrest management, pregnancy in HCM, smart devices in clinical practice, etc.)
Prof. Franco Cecchi
was from 1979 to 2011 medical director of the Careggi and Meyer Hospital in Florence, from 2005 to 2011 Associate Professor of Cardiology at the University of Florence and from 2012 to 2019 Contract Professor at the S. Raffaele University (Milan). He has written numerous papers on hypertrophic cardiomyopathy, has initiated cross-organizational research and has organized and participated in numerous events on HCM. Together with Prof. Olivotto, he has actively contributed to the drafting of the Guidelines of the European Society of Cardiology for Hypertrophic Cardiomyopathy.
