Global ARCH welcomes five new and one returning board member: Ruth Ngwaro, Grace Jerald, Lavinia Ndinangoye, Mehwish Mukhtar, David La Fontaine, and Bistra Zheleva.

Ruth Ngwaro is originally from Kenya but is now living in the United States. 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.

Grace Jerald was the first CHD 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.

Lavinia Ndinangoye is a nurse, musician, and an RHD ambassador in Namibia. At the age of 9 she was diagnosed with RHD 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.

Mehwish Mukhtar is a radio broadcaster, teacher, social activist, motivational speaker, and blogger in Lahore, Pakistan. As the mother of a son with 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.

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.

Bistra Zheleva, the Vice President of Global Strategy and Advocacy at Children’s HeartLink, has been welcomed back to the Global ARCH board with open arms after a brief hiatus. 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. In her year away from the board Bistra continued to contribute her expertise to our advocacy efforts.
You can read their full bios HERE.

RHD Action launches 2019 Small Grants Programme

RHD Action is pleased to launch the first round of our Small Grants Programme for 2019 with this request for proposal. To date, 13 projects in a dozen countries from across the globe have been funded & supported through our RHD Action Small Grants Programme which was launched in 2017. More

‘Listen to my Heart’: a collaborative event with a focus on people living with congenital heart disease

On March 16, 2019, the Children’s Heart Disease Research Unit, in partnership with Brave Little Hearts SA and Heart of Hope, hosted our 2nd patient-focused workshop – ‘Listen to my Heart’ – at the Red Cross War Memorial Children’s Hospital. More

Children, patients, and the young have a voice at the UN meeting on NCDs
“The greater presence of young people and patients is an encouraging signthat the agenda is shifting”, says Bistra Zheleva. “The young people becoming engaged in programmes to counter NCDs are remarkable and inspiring. There is a whole new cadre of young medical and public health professionals who care and want to see a change, and their voices were clear and loud. The representative of NCD Free compellingly called out to UN member governments, “We are here, expecting governments to lead the way. Involve us!” More

Global ARCH board member Hannah Amora speaks at UN meeting on NCD’s – patient and caregiver’s views finally being heard
“When Maven was born in 2011, he was diagnosed with a congenital heart defect. This involved a number of conditions, some of which doctors expected would resolve on their own. But one of those — a pulmonary stenosis — would require surgery when he was older, at an estimated cost of $20,000. That is a significant price tag just about anywhere in the world but a particularly high one for a young, working-class family living in Cebu City, Philippines. More

Global ARCH attends UN General Assembly for Prevention and Control of NCDs
On July 5th, 2018, Global ARCH attended the Interactive Hearing in preparation for the third High-level Meeting of the UN General Assembly on the Prevention and Control of Non-Communicable Diseases (NCDs) as part of the Children’s HeartLink delegation. Global ARCH President Amy Verstappen advocated for the recognition of rheumatic and congenital heart disease as a major cause of NCD mortality and disability worldwide. She joined the American Academy of Pediatrics, the Global Health Council, Partners in Health, and many other stakeholder groups in calling for life-long access to needed medical care for every person affected by NCDs.

Global ARCH invited to speak at the Cochrane Colloquium
Global ARCH has been selected to present at the Cochrane Colloquium, being held in Edinburgh, Scotland September 16th – 18th. Entitled Beyond the RCT: How Global Patient Organizations Build Research Capacity and Impact , the presentation will highlight the ways CHD and RHD advocacy groups in low and middle-income countries support the development of clinical research.   Cochrane is an international nonprofit dedicated to evidence-based medicine that promotes patient and family engagement in research.