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 congenital heart disease patient and a physician assistant in adult congenital heart disease (CHD), recently retired. 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 since 2004 has been a passionate advocate in the CHD community.
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.
Flavia Kamalembo Batureine
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.
Belen Blanton Altuve
Originally from Venezuela, Belen Blanton Altuve has lived in the U.S. for 30+ years. Born with tricuspid atresia, she had her first and only heart surgery in the U.S. In her 30s, Belen developed Eisenmenger syndrome, and her condition deteriorated to the point where she was not eligible for a heart/lung transplant. She joined the Adult Congenital Heart Association where she learned more about her defect, connecting with other CHD patients, as well as ACHD cardiologists and caregivers. Belen and her husband have created Fundacion Estrellita de Belen, a very active non-profit that provides cardiac care to low-income children in Venezuela. Belen has been working hard to help these children have the same fighting chance that she was fortunate to have early in her life.
Blanca del Valle
Blanca del Valle spent many years working in leadership roles in the financial sector, and more recently participates in health, culture, and citizenship initiatives. In 2008, she joined Kardias as its Executive Vice President, dedicating herself to improving access to quality care for children with CHD in Mexico. Since 2017, she has administered two emergency relief funds totaling more than $5 million. She currently heads Fondo de Inversión Social Kaluz comprised of Core Ciudades Vivibles y Amables, Fundación Kaluz, and Museo Kaluz. She is also the founder and treasurer of “Red de Donantes Ensamble”, a network of the most important donor institutions in Mexico. She seats in the board of several non-profit and for-profit institutions in Mexico and abroad, like Grupo Financiero Ve por Más, Fundación BBVA México, as well as the advisory board of Centro Mexicano para la Filantropía and Harvard´s David Rockefeller Center for Latin American Studies.
Anu Gomanju
Anu Gomanju is a non-communicable diseases (NCD) patient advocate as well as a person living with rheumatic heart disease (RHD) from Nepal. She advocates for cardiovascular health for all and the meaningful engagement of people living with NCDs (PLWNCD). Along with her involvement with the Global ARCH as a board member, she is affiliated with the NCDI Poverty Network as the ‘Steering Committee Youth Advocate’ and ‘Voices for PEN-Plus’. In Nepal, Anu works as a Public Health Officer with a non-profit children’s hospital network called the Kathmandu Institute of Child Health (KIOCH). Academically, she is trained as a global and public health professional. Anu is also involved with global health actors like the WHO, WHF, and alliances of patient and family organizations representing Nepal and Asia. She is the Voices of NCDI Poverty Advocacy Fellow Alumna (2021-2022) of the NCDI Poverty Network, USA. She aspires to empower people living with chronic conditions through health literacy, engagement in policy advocacy, and research to ensure good quality and affordable health care for all.
Grace Jerald
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.
Tendai Mayo
Tendai Moyo, born and raised in Zimbabwe, became a fierce advocate for CHD patients after she lost her baby daughter to the disease. Her vision was born out of grief and loss. Without the background or resources to take action, she joined Global ARCH for support and inspiration. Since then, she has founded Brave Little Heart Zimbabwe, and in 2021 officially established a cardiac ward at Mpilo Central Hospital in Bulawayo. The new unit was established to improve access to specialist services and corrective care to children with heart conditions. She hopes for the units to be replicated across the 10 provinces of Zimbabwe, and for childhood heart disease to be included in the National Health strategy.
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.
Ruth Ngwaro
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 congenital heart disease and RHD rights, policy changes, and creating awareness in the community.
Amaya Sáez
Amaya Sáez, from Madrid, Spain, is the General Manager of Menudos Corazones Foundation, the leading CHD organization in Spain. She was also a co-founder and inaugural Vice-President of CardioAlianza, the first organization in Spain for people with cardiovascular diseases. Trained as a lawyer, she has been a part of the executive committee of the Pro Bono Spain Foundation since 2021, the entity that brings together the main law firms and is responsible for facilitating access to Law and Justice for NGOs. Amaya’s sister has a son with complex CHD.
Bistra Zheleva
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.
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).
Nahimeh Jaffar has worked as a certified Project Manager (PMP) in various fields, including Public Health, Biotech, and Pharmaceuticals, working within clinical settings such as hospitals and clinics. In addition, she worked with global communities in Africa, the Caribbean, and the Middle East, supporting various social impact projects. Ms. Jaffar has been involved in preventive health initiatives in collaboration with the Center for Disease Control (CDC, USA) and the Center for Medicare and Medicaid Services (CMS, USA).
Ms. Jaffar holds an MBA in Business Development from the Swiss Institute of Higher Management, Vevey, Switzerland, and a bachelor’s degree in Consumer Affairs from California State University, Northridge, USA.
