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. She has 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 received a Masters in Education in 1990 and a masters in Global Health in 2019.
Disty Pearson – Vice-President
Disty Pearson is the parent of a CHD patient and a physician assistant in adult congenital heart disease (CHD). She has worked with CHD patients over the past 40 years, first in cardiac surgery and for the last 20 years with the Boston Adult Congenital Heart Service (BACH) at the Boston Children’s Hospital and the Mass General Brigham. She is a founding member of the ACHA Medical Advisory Board and is a member of the American College of Cardiology. Disty recognized early on the importance of the patient and family voice in all decisions affecting the care of patients and is dedicated to improving the lives of those affected by childhood onset heart disease throughout the world.
Shelagh Ross – Secretary
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 congenital heart disease (CHD). She is a CHD patient with tetralogy of Fallot, and has undergone several surgeries and interventions. She is a medical and health writer/editor and website manager, and a volunteer advisory council member with the Heart & Stroke Foundation.
Bistra Zheleva – Advocacy
Bistra is the Vice President of Global Strategy and Advocacy at Children’s HeartLink. She is an International development expert with close to 20 years of experience in program implementation and advocacy for improved access to care for children in need of pediatric cardiac services. She’s led collaborative efforts in many global and cultural settings with diverse groups of stakeholders and has depth of knowledge in all aspects of NGO management and health systems strengthening. Since 2003, her experience with Children’s HeartLink has taken her to many countries around the world making her a passionate advocate for the needs of children with heart disease.
David La Fontaine – Treasurer
David La Fontaine graduated from Haverford College near Philadelphia in 1983. He has worked in community-based urban redevelopment, and currently heads a non-profit organization that develops affordable housing and mixed-use properties in partnership with local neighborhood leadership in Philadelphia. David is also committed to health equity and helping people with CHD and RHD access the care they need to live healthy lives.
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 9 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 Grown Up Congenital Heart issues.
Grace was the first congenital heart patient in Malaysia to undergo the switch operation for Transposition of the Great Arteries. With a Bachelor of Arts (Hons) from the University of Malaya in Malaysia, Grace has held numerous positions in database management, event planning, and empowering and running volunteer teams. Throughout 2020 she has been a valued member of the Global ARCH communications committee. She is also a life member of Friends of IJN, a volunteer support group in the National Heart Institute Hospital. She currently works in Kingdomcity, a global Christian movement in multiple locations around the world.
Mehwish is a radio broadcaster, teacher, social activist, motivational speaker, and blogger in Lahore, Pakistan. As the mother of a son with congenital heart disease (CHD), she is a tireless advocate for CHD patients, helping other families find proper cardiac care for their CHD children. Mehwish is a committed volunteer and someone who will bring creative and advocacy skills to the Global ARCH team.
Lavinia Ndemutila Ndinangoye
Lavinia is a nurse, musician, and an RHD ambassador in Namibia. At the age of 9 she was diagnosed with rheumatic heart disease but for many years was lost to follow up. As a person with health challenges, Lavinia developed a great passion and desire to help and serve others, especially those with health-related issues. As a musician, Lavinia recorded the RHD awareness song “GET BACK YOUR CONFIDENCE”, which was launched during a local RHD campaign. She is currently running a project called ‘RHD IS NOT A DISABILITY’ to create awareness of rheumatic fever prevention.
Originally from Kenya but now living in the United States, Ruth is an experienced, passionate, and well-respected public health advocate and professional. As a congenital heart disease (CHD) patient, Ruth founded the non-profit organization Kenya Mended Hearts Patient’s Association (KMHPA). Through her impressive leadership, the organization continues to successfully advocate for CHD and RHD rights, policy changes, and creating awareness in the community.
Dominique Vervoort, MD
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.
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, prior to the global pandemic she spent a significant amount of time on the ground in Africa for work, but is now based in France and the UK. Claire is also an editor on the Board of the National Institute of African Studies’ publication, The Saharan. Claire’s mother tongue is English, and she also speaks German, French, Italian, and some basic Russian.