Our History

Until the 1960’s the South African National Council for Mental Health delivered services to persons with epilepsy. Dr AV Bird from Johannesburg presented a “Blue Print on Epilepsy” to the National Council for Mental Health which led to the establishment of a “Division of Epilepsy” in October 1963. It soon became clear that the “Division for Epilepsy” needed to function as an autonomous national council and in October 1964 this Division became a steering committee.

A National Conference on Epilepsy was held in Pretoria from 27 to 29 September 1967 with the South African National Epilepsy League (SANEL) founded on 29 September 1967. An Executive Committee was elected with Mr WH Barnard as chairman and Dr H Moross as vice-chairman and on 1 June 1970 Mrs A de Villiers was appointed as the first National Director with an office in Pretoria.

SANEL was established as a decentralised body with structures in the Witwatersrand and Pretoria (now Gauteng), as well as Cape Town and Durban. 99% of the focus was on people with epilepsy, particularly in terms of social work services.

The initial establishment of Branches:

  • 17 June 1969 Witwatersrand Branch – An office run by volunteers was established in Johannesburg but closed during the 1970s due to financial problems.
  • 5 August 1969 Western Cape Branch
  • 13 August 1969 Natal Branch
  • 29 January 1970 Pretoria Branch – The Branch closed during the 1970s due to financial problems.
  • April 1973 East London and Border Branch – The Branch was closed due to financial problems.
The 1970s saw the establishment of residential care centres and protective workshops despite financial challenges. The mining industry slumped in the East Rand and disused mine accommodation in Springs was purchased at a good price and converted into residences and protective workshops.

  • 1973: The first residential care centre was opened in Geduld Springs and the first SANEL Industrial Centres and protective workshops were established under the guidance of Mr Bob Wolf (a teacher at the Dr WK du Plessis School for children with epilepsy).
  • 1975: A second residential care centre accommodating 30 residents was opened in Springs (Dersley Centre). In 1988 this centre merged with the Geduld Centre to save costs. Dersley Centre became the regional office of the current Gauteng Branch.
  • 1979: A complex was purchased in Dullstroom in the then Eastern Transvaal. This centre currently accommodates 65 residents and is known today as the Mpumalanga Branch of Epilepsy South Africa.
During the 1980s the organisation was restructured with decision-making centralised with new Branches established while the organisation successfully applied for registration as a non-profit organisation.

  • 1980: A third centre in Springs (Daggafontein Centre) was purchased and opened.
  • 1981: The National Director passed away and a shortage of funds resulted in the closure of the National Office in Pretoria. Mr Bob Wolf was appointed as the new National Director of SANEL. His position became that of Executive Director and the National Office was transferred to Springs. A protective workshop was opened in Dersley, Springs which merged with the Geduld workshop in 1988 as a cost-saving measure. The facility was sold to a private company.
  • 1982: The organisation was totally reorganised, changing from a national organisation with decentralised branches to a centralised national organisation. Duikweg Centre in Springs, which accommodated 46 people, was opened. The centre merged with other centres in Springs to save costs in 1988. The facility was sold to a private buyer. The workshop in Wellington was opened.
  • 1983: Two workshops (one in Pietermaritzburg and one in Kwa-Thema, Springs) were opened.
  • 1984: A residential care centre opened in Parys in the Free State, known today as the Free State & North West Branch.
  • 1985: A workshop was opened in Lansdowne, Cape Town (known today as Care Craft Lansdowne). The Knysna Residential Care Centre opened (known today as the South Cape/Karoo Branch).
  • 1986: The National Director (Mr Bob Wolf) resigned and Dr P Kitshoff was appointed as the new Executive Director. The organisation conducted research regarding service delivery, focusing on defining people with epilepsy and the services required/provided. A need for services was identified in the Groblersdal (Moutsi) area with the community supporting services on an equal basis to persons with epilepsy.
  • 1987: SANEL was again restructured with the Head Office becoming the National Office and moving from Springs to Edenvale. The branches were decentralised geographically and received autonomy with regard to services and finances. The following regional branches were formed: Gauteng, Western Cape, Knysna, Mpumalanga, Free State and Northern Province, Durban and Coastal areas, and Pietermaritzburg and Inlands areas. The National Office in Edenvale was closed and provincial Branches were registered as independent NPOs.
  • 1988: A new constitution and national structure were formed and a new (smaller) National Office (with Ms Kathy Pahl as National Director) opened in August in Cape Town. The Dersley and Duikweg centres were closed and merged with Geduld and Daggafontein Centres. The Kwa Thema and Dersley workshops closed down and merged with the Geduld workshop (now known as the East Rand Workshop).
  • 1989: The National Office was reopened and tasked with coordination, marketing materials and campaigns, national and international relations, as well as standards and policies. With three people employed, the National Office was responsible to establish and maintain a national footprint and strengthening the organisation.

During the 1990’s SANEL started focusing more on community outreach with several outreach and project offices established, particularly in the Mpumalanga and (then) Northern Province (now Limpopo). This decade also saw the first disaffiliation of the Branch in Durban.

  • 1991: More emphasis was placed in the Gauteng region on community development and a sub-office opened in Soweto.
    The Nico Nel workshop opened in Cape Town. The Elandsdoorn residential care centre opened in Dennilton (now Limpopo), as well as a protective workshop in Siyabuswa.
  • 1992: A satellite office of the Gauteng Branch opened in Braamfontein, Johannesburg to render services to people in the greater Johannesburg and West Rand areas, including the Johannesburg workshop which provided protective work to people with epilepsy.
  • 1994: A frail care unit was erected at the Daggafontein Centre for 34 frail residents.
  • 1998: Project offices were established in Elukwatini and Amersfoort in Mpumalanga. In December the Mick Leary Educational Trust was established (now known as the Epilepsy SA Educational Trust).
  • 1999: National Chairperson: Mzolisi ka Toni
The start of the new Millennium saw the re-affiliation of the Branch in Durban. The Board had served for some 10 years during a period of rationalisation and decentralisation. Strong and autonomous Branches and the proximity of some Branches to the National Office required the organisation to find equilibrium. In addition, the move to transform protective workshops started, as well as a stronger link between social and economic development. This decade also saw the emergence of advocacy and human rights as a major focus of the organisation, as well as a stronger focus on people with epilepsy. A major landmark in the history of the organisation was the name change from SANEL to Epilepsy South Africa in 2002. Entities within the organisation are connected more, especially between Branches. The end of this decade saw the increased utilisation of consultants within the organisation, as well as alternative models based on alternative thinking.

  • 2000: In April the Durban Epilepsy Foundation re-affiliated as a Branch of SANEL. A national conference (Epilepsy 2000: Out of the Shadows) was held in Cape Town from 15 to 17 September.
  • 2002: At an Extraordinary General Meeting held on 20 April 2002 in Durban the name and logo of SANEL changed to Epilepsy South Africa. The name of the Gauteng Branch changed at the Annual General Meeting held on 11 June 2002 and all the other branches during 2002. A national conference (Epilepsy 2002: African Renaissance) was held in Johannesburg from 19 to 20 October.
  • 2004: The year was further characterised by strong policy development, the formalisation of job grading and a constitutional review process.
    Funding from the National Lotteries Distribution Trust Fund (NLDTF) created opportunities to initiate work in the North West province which led to the establishment of a satellite office in Vryburg in due course.
  • 2005: The focus on financial sustainability largely meant the end of street collections and consideration of impact (especially in terms of employment creation and food security). Following strategic planning in 2004, the National Office appointed a National Social Development Manager and National Economic Development Manager. Noeline de Goede was appointed as the National Director.
    Epilepsy South Africa adopted a new national constitution on 23 April.
  • 2006: Funding by the National Development Agency (NDA) enabled the establishment of vegetable gardening in the Free State (which largely replaced the protective workshop) and the upgrading of the residential facility. Attempts to establish a Branch in the Eastern Cape failed. A national conference (Vuka! Let’s Talk About Epilepsy!) was held in Durban from 11 to 12 May.
  • 2007: In March the Durban & Coastal Branch disaffiliated following a series of interventions by Epilepsy South Africa. Entrepreneurial development was established as a service within Epilepsy SA, growing from previous income generation projects. The Mick Leary Educational Trust was renamed the Epilepsy SA Educational Trust.
  • 2008: Stimulation centres and related programmes were established, while the organisation also started supporting other NPOs (e.g. training interventions). This required the retraining of staff. The Free State & North West Branch successfully negotiated EU funding to take over the management of HIV volunteers, as well as a tender from the Department of Health. External pressure also led to a focus on cooperatives, SMME development and skills development.
  • 2009: The Free State & North West Branch established the Dome Business Hub and won a provincial award for this work.
  • 2010: In February the National Office relocated to its own premises in Parow, Cape Town. Epilepsy South Africa adopted a new national constitution on 13 December.
  • 2011: Epilepsy SA hosted the National Advocacy & Human Rights Conference for Persons with Epilepsy in Stellenbosch in February. This event led to the establishment of the Advocacy & Human Rights training programme (including the training of trainers and master trainers) which attracted CPD points for social development professionals. The KZN Midlands Branch in Pietermaritzburg disaffiliated. Although the matter was settled out of court, the organisation incurred massive legal costs. The Western Cape Branch secured funding in the amount of R23 million from the National Skills Fund to establish leadership. The Branch also launched eDESS (Epilepsy Disability Employment Support Service).
  • 2012: The National Office hosted a mobile neurology clinic in the Eastern Cape in November. Despite the success of this initiative, the lack of funding has prevented further clinics. The National Office launched an Employment Manual. The 1st African Epilepsy Congress was held in Nairobi, Kenya in June which the National Director attended. Epilepsy South Africa adopted the Independent NPO Code.
  • 2013: The Eastern Cape project was formally recognised as a Branch during the National Board meeting held on 14 September. The National Director was elected as the Vice-Chairperson of the African Regional Executive Committee of the IBE. The National Office launched the Reasonable Accommodation Guide for Persons with Epilepsy.
  • 2014: The National Office restructured by significantly reducing staff and selling the building (Syfin House) in favour of a virtual office.
    The organisation formalised its Epilepsy Ambassador programme with three Ambassadors recognised: Nicole Laxton, Kai Fitchen and Justin Dekker. The 2nd African Epilepsy Congress was held in Cape Town. Epilepsy South Africa adopted a new national constitution on 13 September and established the National Information Management System (NIMS).
  • 2015: The International Bureau for Epilepsy (IBE) established International Epilepsy Day on the second Monday in February. The World Health Assembly adopted a resolution on epilepsy in May. The organisation introduced FLAME as the mascot, as well as an “invisible” disability logo. Epilepsy South Africa adopted a new national constitution and national regulations on 12 September.
  • 2016: Branch staff members completed the inaugural Advocacy & Human Rights Training of Master Trainers e-learning programme. The organisation adopted a new national constitution on 17 September. The Flame of Courage Award was instituted with Laverne Stoffels being the inaugural recipient.
  • 2017: The National Director attended the 3rd African Epilepsy Congress in Dakar, Senegal (May). The Flame of Courage Award was made to Thembakazi Babana. A formal risk management programme was approved and implemented. The International League Against Epilepsy (ILAE) created a new epilepsy classification system. The Nicholas Project was established on 17 September as the Epilepsy South Africa youth initiative. A major revision of the national policies and procedures was completed with three manuals adopted by the National Board on 8 April.
  • 2018 Epilepsy South Africa celebrated its 50th anniversary through the 50 for 50 Campaign. Epilepsy South welcomes the next 50 years.

Our Services

Advocacy and Human Rights:
Epilepsy South Africa is committed to advocating for the realization of the human rights of individuals with epilepsy as defined by South African legislation and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

Social Development Services:
We provide a range of social development services to support individuals with epilepsy, including counseling, health and welfare services, daycare facilities, stimulation groups, child and youth development programs, life skills training, and food security projects.

Residential Care:
At our branch-level residential care centers, we offer accommodation and support services for individuals with epilepsy. Our services include providing a safe working environment in protective workshops, stimulation programs, social work services, and medical care.

Community Development:
We believe in empowering individuals with epilepsy to participate in the community. Our protective workshops not only offer employment opportunities but also provide skills development programs to enhance employability.

Small Business Development:
We support entrepreneurship and income generation initiatives at both the individual and group levels. Epilepsy South Africa provides various entrepreneurial development training programs, including those offered by the International Labour Organisation, to empower individuals and groups in starting and managing their own businesses.

Skills Development:
We focus on developing technical skills through on-the-job training for individuals with epilepsy. Our training programs aim to meet industry requirements and standards, enabling participants to access the open labor market or engage in small business development.

Learnerships:
We offer leadership in diverse fields and levels, such as business administration, early childhood development, cleaning and hygiene, and furniture manufacturing. These programs provide valuable skills and knowledge to individuals with epilepsy, enhancing their career prospects.

Bursaries:
Through our Educational Trust, we offer bursaries for tertiary education to students with epilepsy. Applications for bursaries must be submitted on the prescribed form by October 31 annually, providing opportunities for educational advancement and empowerment.

Our National Board

Board Members

MARIO DA COSTA
National Chairman

TIM DE VILLIERS
National Vice Chairman

CLAYTON SAMDODIEN
National Treasurer

SHARLENE CASSEL
National Director

PUMEZA PHILLIIPS
Elected Member of the National Board and National Executive Committee

ULFA DAVIDS
Youth representative (Elected Member of the National Board and National Executive Committee)

JUSTIN DEKKER
Youth representative

Branch Representatives

HENRY PETERSEN
Western Cape

CAROL WILKINSON
South Cape/Karoo

MAXINA MABUZA
Mpumalanga/Limpopo

THEA VAN DER MERWE
Gauteng

ANGELIQUE KLEINHANS
Free State

EDE TYOPO
Eastern Cape

Branch Directors

MTHOBISI MADLALA
Eastern Cape

SOLLY MOKGATA
Free State/North West

LEE-ANNE VAN DEN BERG
South Cape/Karoo

AILEEN LANGLEY
Gauteng

REBECCA MASHIGO
Mpumalanga

WENDY NEFDT
Western Cape