This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others. My wife, Roselle DG Estrella, is a 43-year-old hard-working woman. She has been working since she was 16 years old helping with farm work.When Roselle was a girl growing up on their family’s...
I believe that working together and building a common voice is the best way to create the change we need: equal access to affordable lifelong specialized heart care, mental health support, and social programs and policies addressing disability, discrimination, and equal access to education and employment....
On May 21, Menudos Corazones Foundation organized the "Day for the Visibility" to recognize the rights of people with congenital heart disease and their families, at the Congress of Deputies in Madrid, Spain. At the event they launched “Menudos Corazones - Decalogue for patients with congenital heart disease and their families”, with the following 10 goals...
I was diagnosed with rheumatic heart disease in 2001 when I was 11 years old. After a bout of tonsillitis, I started to experience symptoms of rheumatic fever. The sore throat from the tonsillitis turned to chest pain, joint pain, chronic fatigue, shortness of breath, increased heart rate, and swollen hands and feet. ANU (CENTER) WITH...
Tendai Moyo, founder of Brave Little Hearts Zimbabwe, is an active member the Global ARCH Board of Directors. She joined to help raise awareness about congenital heart disease (CHD) and the devastating impact it can have on families struggling to find lifesaving medical care for their babies with CHD.A race against time to save "Rudo"In...
Brave Little Hearts South Africa (BLHSA) is a support and advocacy group for parents of children with congenital heart disease (CHD). BLHSA strives to raise awareness of CHD by facilitating and implementing support programmes for families with CHD, and advocacy by creating platforms in the medical field for engagement concerning critical CHD matters. BLHSA also...
What is the main goal of the Ollie Hinkle Heart Foundation?OHHF’s central goal focuses on the Take Heart Initiative to cultivate an equitable standard of care that centers the voices of every person and family affected by childhood onset heart disease in collaboration with clinicians and health systems by empowering and educating caregivers, building confidence...
I’m a mother of two, my daughter who is about to turn 15 has a complex congenital heart defect and has had several heart operations throughout her life at Children’s hospital in Boston.When I was pregnant with her and found out that she had CHD, I immediately started to look if there was a community...
Rheumatic Heart Disease Philippines was founded in 2017 because of my wife who has RHD. At first we didn’t know anything about RHD, but my search on social media connected us to a community of other RHD patients and their families. Together we exchange knowledge, and share experiences about the hardships and sacrifices we have...
In early June Brave Little Hearts Zimbabwe participated in our National Youth Business Expo, as we are looking at establishing sustainable projects to help empower our communities to attain financial freedom. This is so important because donors are hard to come by, and the financial burden of heart communities is so huge. Our target is...
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.