Amy Verstappen – President and Chair
Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. During this time she served as an advisor to the Centers for Disease Control; the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world. Ms. Verstappen is currently the President of the Global Alliance for Rheumatic and Congenital Hearts, and is studying Global Health at the University of Barcelona.
Disty Pearson – Vice-President
Disty Pearson is a physician assistant. She has worked with CHD patients over the past 36 years. The first 11 years she worked in cardiac surgery and the last 18 at the Boston Adult Congenital Heart Service (BACH). She is a founding member of the ACHA Medical Advisory Board and chair of the Global Health Working Group of the International Society of Congenital Heart Disease promoting ACHD care globally. Also, Disty is the parent of a CHD patient.
Shelagh Ross – Communications Chair
Shelagh Ross is the co-founder and past-president of the Canadian Congenital Heart Alliance (CCHA), a non-profit that supports and advocates for Canadians with CHD. She is a CHD patient with tetralogy of Fallot, and has undergone several surgeries. She is a writer/editor and website manager, and is a volunteer advisory council member with the Heart & Stroke Foundation.
Dominique Vervoort, MD – Advocacy Chair
Dominique is a medical graduate from Belgium with extensive experience in the field of global surgery, enrolled in a Master of Public Health and Master of Business Administration at Johns Hopkins University. As a physician and aspiring pediatric cardiac surgeon with global surgery background, Dominique has been a passionate advocate for access to safe, timely, and affordable cardiac care for children living with CHD and RHD worldwide. He co-founded and co-chaired the International Student Surgical Network (InciSioN), the world’s largest global surgery trainee network with over 5,000 medical students, residents, and young doctors in over 80 countries. At Johns Hopkins, he is concentrating on health economics, health care management, and health care financing, to better understand and influence domestic and international policy discussions and resource allocation for health services.
Farhan is a social innovator and philanthropist, and founder and volunteer CEO of Pakistan Children’s Heart Foundation, an NGO working for improvement of quality of life for CHD patients in need, focused on building a specialized children’s heart hospital in Lahore, Pakistan. He started the organization after his young daughter, who was born with a single ventricle, died in 2013. Since then, he has devoted his life to raising awareness of CHD and helping underprivileged CHD patients get appropriate, timely treatment. He and his team have raised over $4.5 million to fund more than 1800 children heart surgeries to December 2019. Among other things, Farhan has served with Indus Health Network as COO for the construction of a 600-bed specialized treasury care hospital in Lahore, and co-founded and was senior consultant at Maison Consulting & Technology, a successful company based out of Pakistan, UAE, USA and Saudi Arabia. Farhan has a B.Com degree from the University of Punjab. He was an active participant in the International Congenital Heart Leadership Summit in Barcelona in 2017, which led to the creation of Global ARCH.
Flavia Kamalembo Baturine
Flavia has lived with rheumatic heart disease (RHD) for 8 years, and is a member of the Rheumatic Heart Disease Support group in Uganda, under the Uganda Heart Institute. Through the support group, she reaches out to other patients, families or individuals to offer social support, counselling, advocacy and research. She is also a critical care nurse, working in a cardiac intensive care unit. She is dedicated to raising awareness about RHD and CHD so that patients can receive appropriate and timely care, as well as contributing to evidenced-based research to improve care of populations affected by CHD and RHD. Flavia was an active participant in the International Congenital Heart Leadership Summit in Barcelona in 2017, which led to the creation of Global ARCH.
Dr. Vikas Desai
Dr. Desai is a medical doctor who has been specializing in public health for 45 years. She is currently the Technical Director, Urban Health and Climate Resilience Center of Excellence in Surat City, Gujarat State, India.She is the Vice chairperson of the registered trust “national Institute For Woman and Child Development (NIWCD) ” and with her initiatives NIWCD launched “Child Heart Care Project (CHCP) ” in 2002. She is the technical facilitator of the activities of CHCP. In 2005 with CHCP advocacy program of free treatment of CHD of children from below poverty line was initiated by state Government which is now an activity transformed under Rashtriy Balsuraksha Karyakram (National Child Protection Program).
Noémi D. de Stoutz
Noémi was born with complex pulmonary atresia, and has had no heart surgery. She is a physician specializing in oncological palliative care, and has served on national and EU projects. She is a member of the Swiss ACHD patient association CUORE MATTO (the Swiss Association of Adults with Congenital Heart Disease), and honorary member of the Swiss Cardiology Association. Noémi lectures and publishes on GUCH issues.
Claire is an energy and infrastructure lawyer, with a focus on Africa and other Emerging Markets. She is also a congenital heart disease (CHD) patient, and understands the challenges that many patients with childhood-onset heart disease experience. Originally from the UK, she spends a significant amount of time on the ground in Africa for work. Claire also serves on the Board of the National Institute of African Studies, which promotes the communication of African aid and development issues. She is also an editor on the Board of their publication, The Saharan. Claire’s mother tongue is English, and she also speaks German, French, Italian, and some basic Russian.