Chair: Dr Helen Malherbe

Helen is a focal person for Trisomy 18 (Edwards Syndrome) having lost her first child, Madeleine, to the disorder in 2004. She became involved in GA-SA in mid-2014 and is passionate about ensuring that all those affected or at risk of congenital disorders have equal access to appropriate genetic services. She believes the first steps in achieving this are through uniting the patient support sector, educating health care professionals and raising the political profile of congenital disorders as a health care issue in South Africa.

Originally a plant geneticist and a science communicator, she was conferred her PhD in April 2017 which investigated the ‘renewed need for services for the care and prevention of congenital disorders in South Africa’ at the University of KwaZulu Natal (UKZN). She is currently in the second year as a Post-Doc Research Fellow at UKZN. In September 2018 she was the winner of the Rare Diamond Healthcare Award for Advocacy.

Vice Chair: Mrs Kelly du Plessis

Kelly is the founder of Rare Diseases South Africa, a non-profit organisation for rare diseases. She is Mum to Juan, diagnosed with Pompe disease in 2010. Kelly is passionate about patient advocacy and access to life saving treatment.

Kelly is involved in GA-SA media and is also the liaison between GA-SA and Rare Diseases South Africa.

Treasurer: Position Vacant

If you are a GA-SA member, have the relevant financial skills set and experience in financial management, and are interested in becoming Treasurer please contact us at [email protected]

Secretary: Position Vacant

If you are a GA-SA member, have the relevant admin skills set and are interested in becoming Secretary please contact us at [email protected]

General Board Member: Prof Katherine Scholtz

Kathrine is currently in an academic position at the University of Limpopo as Head of the Human Genetics Unit, which involves teaching, research and community engagement. She completed the occasional courses in Medical Genetics and Genetic Counselling at UCT in 2015 and 2016 and plans to register for an MSc (Med) Genetic Counselling at UCT next year. The majority of her current research projects are focusing on genetic disorders within the Limpopo Province, and an attempt to get an idea of what the current situation in the province is with regards to congenital disorders.

The Limpopo Province, while being one of the largest provinces, is one of the most under-resourced with regards to genetic services and genetics capacity. The province needs to strengthen their participation through patient and care-giver support groups, genetic counselling services, clinical geneticists, genetic diagnostic services and research.

General Board Member: Mr Hedley Lewis

Hedley is the Chief Executive Officer at Smile Foundation. He left Vodacom and the corporate world to make a difference in the lives of South Africa’s underprivileged children. Vodacom gave him the opportunity to shoot for the stars and learn from some of this country’s finest leaders, starting in the finance department and then working with the Managing Directors office within the loyalty programs department. During his tenure at Vodacom he received the Managing Directors’ award.

Hedley is married to Lisa and has twins and a baby girl which keep them on their feet. Hedley graduated from the University of Johannesburg with a B.Com Accounts Degree. Before joining the Smile Foundation, He worked at the Jewish Helping Hand to motivate and encourage young Jewish members to support their community.

Hedley is responsible for partnership growth, fundraising, management of budgets and finance as well the marketing of Smile foundation. “Every day is totally different but there is one common thread, we are working together with the Department of Health and their hospitals to assist children to Smile.”

General Board Member (interim): Dr Merrill van der Walt

Merrill an established academic (currently completing her second PhD focusing on modelling services for mental health in South Africa) and works as a big data scientist in the financial sector.

Merrill has personal experience with rare diseases and is passionate about raising awareness, particularly in the mental health sector.