Our leadership team works closely with our Advisory Councils—an inspiring group of experts and advocates who guide our mission with their unique insights and dedication. Click the button above to meet the remarkable individuals shaping our work.
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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.
Anu Gomanju
Anu Gomanju is a patient advocate for ending Rheumatic Heart Disease (RHD) and a person living with RHD from Nepal. She is dedicated to ensuring timely access to high-quality, affordable healthcare and advocates for meaningful engagement for people living with non-communicable diseases (PLWNCD). Anu volunteers as an RHD patient advocate for several national and global organizations in a variety of capacities. In addition to her role as a board member of Global ARCH, is affiliated with the NCDI Poverty Network, where she serves as the ‘Steering Committee Youth Advocate’ and as a member of ‘Voices for PEN-Plus.’ She is also involved with global health organizations such as the WHO, the World Heart Federation, and alliances of patient and family organizations representing Nepal and Asia. Academically, Anu is trained as a global health professional, and is the NCDI Poverty Network’s Voices of NCDI Poverty Advocacy Fellow Alumna (2021–2022). She is passionate about empowering individuals with chronic illnesses and is actively engaged in policy advocacy, health literacy, and research.
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.
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.
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.
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.
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.
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.
Meg Didier
Meg Didier is a dedicated patient advocate and engagement strategist whose personal journey with Hypoplastic Left Heart Syndrome (HLHS) fuels her commitment to advancing patient-centered care and fostering collaboration in healthcare. As the Director of Patient Engagement at Sisters by Heart, she empowers families affected by single-ventricle heart disease through innovative resources and programs. Co-founder of Single Ventricle Patient Day, Meg collaborates with the Fontan Outcomes Network to amplify patient voices in quality improvement efforts. Additionally, as a leader at the Global Liver Institute, she drives change through flagship advocacy programs for those with Fontan-Associated Liver Disease (FALD), equipping patients and caregivers with the skills to create meaningful impact. Her work reflects a lifelong dedication to improving care and outcomes for those with CHD.
Timothy Johnson
Timothy Johnson has a background in international development and global health with more than 10 years’ experience working at the nexus of research, policy and advocacy. Timothy has previously held roles with Telethon Kids Institute, The Australian National University and Reach. Reach is a Geneva-based global NGO, supporting local, regional and global efforts to prevent and control rheumatic fever and rheumatic heart disease.
Timothy has complex congenital heart disease and a passion for improving health outcomes and addressing health inequalities for both the CHD and RHD communities.
Timothy holds a Masters of Culture, Health and Medicine (medical anthropology) from The Australian National University, as well as a Bachelor of International Development from La Trobe University and postgraduate qualifications in Public Health from Edith Cowan University.
Nilima Mehta
Nilima is the Associate Director, Global Health Initiatives, at the U.S. International Development Finance Corporation (DFC) bringing over 13 years designing and leading complex public and private sector health equity partnerships. Before joining DFC, she was a Sr. Innovation Advisor at USAID/Global Health’s Center for Innovation & Impact (CII). Prior to that, Nilima oversaw a global portfolio of primary health care and prevention partnerships at Medtronic Foundation. She also has experience in programs focused on supply chains for global health commodities, integrating behavioral health into community healthcare facilities, and coordinating local & national stakeholders for large-scale disaster response. Nilima holds an M.S. in Public Health from Tulane University School of Public Health & Tropical Medicine, and a B.S. in Biology and a B.A. in Spanish Language & Literature from the University of Nevada, Reno. As a congenital heart defect survivor, she is especially excited to contribute to the mission of Global ARCH.
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.
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).
Kate is the Executive Director of the Global Alliance for Rheumatic and Congenital Hearts (Global ARCH). With a background in public health, international health, and U.S. value-based care, she has led multiple global initiatives, including the International Quality Improvement Collaborative for Congenital Heart Disease (IQIC) at Boston Children’s Hospital. Her work has taken her around the world, collaborating with healthcare centers focused on congenital and rheumatic heart disease. Kate is passionate about the transformative power of collaboration and patient advocacy, a mission that is deeply personal due to her own family’s experience with congenital heart disease. Under her leadership, Global ARCH is dedicated to uniting patient and family voices and fostering impactful collaborations that improve care access and equity for all affected by congenital and rheumatic heart disease. She is a proud mom to 2 amazing kids and a very cute dog. An avid traveler, she loves exploring new cuisines and connecting with people around the world.
