Archive for June, 2010|Monthly archive page

Epilepsy Myths

In Uncategorized on June 24, 2010 at 8:10 am
We only have a few days left of National Epilepsy Week in South Africa. So much attention was drawn to epilepsy from various people that work with the condition.  Nurses, neurologists, social workers and other disability organisations.  We think this is wonderful! Epilepsy remains a condition that frightens people until they learn more about it. We hope that the short pieces of information this week assisted you to eradicate some incorrect information. In today’s piece we continue to discuss myths that surround people that live with the condition.

Share epilepsy!

Epilepsy MythsEpilepsy is not a ‘one size fits all problem’. It can look, feel and act differently in various people. It is much more common than previously thought and is one of the more frequent neurological problems affecting people of all ages. Few medical conditions have attracted so much attention and generated so much controversy. Throughout history, people with epilepsy and their families have unduly suffered because of the ignorance of others. Fortunately, the stigma and fear generated by the words “seizures” and “epilepsy” has decreased during the past century, and most of those with epilepsy now lead normal lives.

People with epilepsy are very seldom academically challenged. Many people mistakenly believe that they are both intellectual and/or developmental. In the large majority of situations, this is not true. Like any other group, people with epilepsy all have different logical and rational abilities.

People with epilepsy are not violent and the unfortunate image given is both incorrect and harmful. They have no greater tendency towards severe irritability and aggressive behaviors than others.

Rights of people with epilepsy

In Uncategorized on June 24, 2010 at 8:09 am
 The National Office of Epilepsy South Africa continues to send a series of motivational and educational message to our electronic audience.  Thank you for the many replies of those that understand and goes through what our topics discuss.  Take courage!

You can also subscribe to receive shorter messages via SMS by emailing marketing.no@epilepsy.org.za.  We are also sharing these to our Twitter audience.

Enjoy your National Epilepsy Week and do your bit by “Sharing Epilepsy”

  • Rights of People living with epilepsy

Rights of People living with epilepsy

Skills, abilities, qualifications and experience are the qualities that employers are most interested in when considering someone for employment. The South African Constitution guarantees that people with epilepsy have the right to work and to choose their profession. The Employment Equity Act (No55 of 1998) offers protection to people with epilepsy in terms of employment as epilepsy meets the requirements of the term “disability”. Your epilepsy is only relevant if you have seizures that are likely to interfere with your ability to do your job.

People with epilepsy can partake!

In Uncategorized on June 24, 2010 at 8:05 am
It is the second day of National Epilepsy Week 2010.We celebrated National Epilepsy Day yesterday which coincides with the winter solstice – or longest night and shortest day. Yes South Africa the earth turned and it is becoming summer again. Believe it!

At Epilepsy South Africa, we share information on epilepsy and see the light that it presents to those with epilepsy as well as others around them.  Information is key to overcoming the stigma and setback that people experience.  This week is our week to culminate our efforts and shout true facts to a very needy society!
Share epilepsy! 


The ability to partake…The ability to partake...

Having the opportunity to participate in sport and recreational activities is important for everyone, including people with epilepsy. Lack of understanding and how epilepsy affects each person differently, can mean those with epilepsy are cautioned against taking part in some activities when this is not necessary. With qualified supervision where appropriate and applying the necessary safety precautions there is little that you need to avoid if you have epilepsy.

Active recreational activities can improve both mental and physical health and should be encouraged for people with epilepsy. Very rarely is exercise a trigger for seizure activity, but for the vast majority of people living with epilepsy, the benefits of exercise far outweigh the risks.

National Epilepsy Day 2010 : Living with epilepsy!

In Uncategorized on June 24, 2010 at 8:02 am
21 June 2010 National Epilepsy Day and week arrived!  With some international competition for attention from the Soccer World Cup activities – we will persevere, share and talk on behalf of those with epilepsy.The National Office of Epilepsy South Africa will send a series of motivational and educational message to our electronic audience. You can subscribe to receive shorter messages via SMS by emailing marketing.no@epilepsy.org.za.  We are also sharing these to our Twitter audience.Enjoy your National Epilepsy Day and do your bit by “Sharing Epilepsy!”
Living with epilepsy!Many people have concerns about living with epilepsy. Each person experiences epilepsy in several different ways depending on the type of epilepsy, frequency and predictability of their seizures. With a bit of forward planning you can do and enjoy most of the things you want to. By learning to recognize your seizure triggers you can either avoid them or develop certain ways to minimise the risk. Epilepsy will always have an impact on your life, but you can reduce that effect by recognising the issues that affect you and then managing them in a positive way.

Sharing epilepsy!

In Uncategorized on June 15, 2010 at 7:41 am
Dear Reader

 June is always a very special month to Epilepsy South Africa, as we celebrate National Epilepsy Day on 21 June each year and National Epilepsy Week during the week of the 21st June. This year we are celebrating National Epilepsy Week from 21 – 27 June 2010.

You will find a lot of information about our National Epilepsy Week Campaign, events and information in this newsletter and we invite all of you to assist us in Sharing Epilepsy with all South Africans. It is pertinent that we increase correct knowledge about epilepsy to decrease the unnecessary discrimination that people with epilepsy still experience. Let’s adopt a spirit of “can do” and ensure that people with epilepsy are recognised and respected.

You will also read more about our new satellite service in the Eastern Cape that is growing from strength to strength. We congratulate Mr. James Mkalipi for his excellent achievements in such a short time. We are very excited about our new Women Entrepreneurial Development Training Course that is being planned. Read more about this exciting development and contact Marina Clarke for bookings or more information.

It truly seems that June 2010 is a month for celebration. Epilepsy South Africa will celebrate National Epilepsy Day and Week, the country will celebrate the kick-off of the 2010 Fifa World Cup (“Go Bafana Bafana!”) on 11 June 2010 and during 2010 we also commemorate South Africa’s centenary as a country.

Despite the winter cold I hope that you will celebrate National Epilepsy Day and Week with us, focussing on the abilities of people with epilepsy, spreading correct information and changing mindsets towards the positive inclusion of people with epilepsy in all spheres of life.

Noëline de Goede

June E-news Contents:

National Epilepsy Week 21-27 June - The theme and purpose

National Epilepsy Week 21-27 June – The theme and purpose

National Epilepsy Week is the annual awareness raising campaign of Epilepsy South Africa. The aim of this week is to draw the South African public’s attention to epilepsy as a condition. The 21st of June is National Epilepsy Day. Epilepsy South Africa celebrates this day and week as at least 1% of the South African population has epilepsy.

The theme for National Epilepsy Week 2010 is “Sharing Epilepsy”. The aim of this campaign is to educate the general public of the human rights of people with epilepsy. This will assist in dispelling the myths and social stigma associated with epilepsy.

  • By sharing epilepsy, you need to know that it is not contagious. However, people with epilepsy still get ostracized, stigmatized and struggle to find employment. The biggest challenge for people with epilepsy is social stigma which is prevalent because of the misunderstanding of what the condition entails.
  • By sharing epilepsy, it will become a condition that is easily recognised and treated by general health services.
  • By sharing epilepsy, we fight the negative attitudes towards the condition and people with epilepsy
  • By sharing epilepsy, we shed a positive light on the benefit of good seizure management and improve the quality of life for people with epilepsy who often choose to withdraw socially to cope with discrimination and stigma.
  • By sharing epilepsy, we make the nation aware that they can develop epilepsy at any stage of their life.
  • By sharing epilepsy, we make each person aware that their positive attitude and willingness to learn about epilepsy will have a tremendous positive impact for many individuals with epilepsy in South Africa


Refresher: What is epilepsy?

Refresher: What is epilepsy?

It is…

  • A physical condition which is characterised by unusual electrical activity in the brain.
  • The tendency to have recurrent, unprovoked seizures which is caused by a temporary change in the way the brain cells work.
  • A disorder; not a disease, illness or psychiatric disorder, nor mental illness – epilepsy is not contagious.
  • A condition that affects people of all ages and levels of intelligence and from all social backgrounds.
  • It is one of the most common and serious neurological conditions and it affects at least one in every 100 people in South Africa.

There are several types of epilepsy which are generally divided into two main categories; namely generalised seizures and partial seizures

  • Generalised seizures occur when the excessive electrical activity in the brain encompasses the entire organ, during which there may be loss of consciousness. There are several seizure types in this generalized category.
  • Partial seizures occur when the excessive electrical activity is limited to one area in the brain, which causes either simple partial seizures or complex partial seizures.


SMS Campaign to “Share Epilepsy“

SMS Campaign to “Share Epilepsy”

“Share Epilepsy” by supporting our SMS Campaign this week. To receive inspirational and educational text messages for free send your name and “SHARING EPILEPSY” to 4000 120 11 002. Normal SMS rates apply and there are no costs for receiving our messages. You are welcome to unsubscribe from this service at any time. You can also subscribe via email by sending your cell phone number to marketing.no@epilepsy.org.za.

Contact 0860 374537 (0860EPILEPSY) for more information about epilepsy or Epilepsy South Africa.

Living and overcoming, with epilepsy!

Living and overcoming, with epilepsy!

Although epilepsy is one of the most common neurological conditions, it is also one of the most misunderstood. A delay in obtaining the correct information because of misunderstandings about the condition prevents a better quality of life for the person with epilepsy, their families and those around them.

Some of these misunderstandings include:

  • People with epilepsy can’t do certain things like sport, or excel at other things that contain physical or even intellectual work.
  • People with epilepsy should be treated differently than able-bodied people.
  • People have epilepsy because someone did something wrong.
  • A very small percentage of people with epilepsy (especially in rural areas) are fully aware of what the condition entails. Doctors, neurologists and social workers specializing in epilepsy are able to explain the condition to the person with epilepsy and their family, friends, colleagues and community members. This understanding should effectively assist the person with epilepsy to live a full life, making use of different treatments to control the condition. However, despite information about epilepsy being readily available; society continues erecting barriers in the way of people with epilepsy.

For a person with epilepsy co-operation with their doctor is essential in establishing optimum control of the condition. About 80% of people with epilepsy can effectively control their seizures with medication or diets. If appropriate support services are readily available, more people will experience an improved quality of life.

People with epilepsy are often demotivated and prohibited from reaching their true potential due to myths and societal stigma surrounding the condition. If society in general accepts the truth about epilepsy and stops disseminating misinformation and frightening “stories” about the condition, the quality of life of people with epilepsy will improve dramatically, thus enabling them to live healthier and happier lives.

The South African Constitution guarantees people with epilepsy the right to work and to choose their profession. In addition, the Employment Equity Act (No 55 of 1998) offers protection to people with epilepsy in terms of employment as epilepsy meets the requirements of the term “disability” in terms of this Act. As such, people with disabilities (including epilepsy) are included in affirmative action legislation.

Employment options for people with epilepsy include open labour market employment, supported employment, protective employment and self-employment (either in individually or group-owned ventures). People with epilepsy have the same range of abilities and intelligence as the rest of the population.

Isolating people with epilepsy and other disabilities contributes to the alienation that the person feels and hinders that person in his/her attempts to overcome obstacles. We know that recreational activities are very important for socialising and general happiness. This is also true for a person with epilepsy. Achieving balance between a safe and an active life is possible by simply making a few adjustments to activities.

Active recreational activities improve both mental and physical health and should be encouraged for people with epilepsy. Most sports can be safely pursued by people with epilepsy and (with some adjustments) they can enjoy activities which may be considered dangerous by many people. Often the risks are no greater for people with epilepsy than for able-bodied people. The risk of injury must also be weighed up against the positive effects of team participation.



The most important thing to remember is that every person’s seizures are different and that every person experiences living with epilepsy differently from another person. Thus, it is not possible to generalise when talking about epilepsy.

These simple guidelines should assist parents, teachers, family members and friends to support the person with epilepsy:

  • Emphasise what the person is able to do (while advising them about taking sensible precautions) and not what he or she unable to do.
  • Treat the person the same as other people who do not have the condition.
  • Help the person to integrate into as many social activities as possible as this will help him/her to develop the required social skills like all other people.
  • Do not overprotect the person with epilepsy.
  • Do not make the person/child or his/her condition the centre of attention or every discussion.
  • Do not blame the child/person or his/her epilepsy if the family experiences difficulties.
  • If someone in your family or a friend experiences a seizure consult a medical practitioner (preferably a neurologist) to obtain an accurate and specific diagnosis. If the person is diagnosed with epilepsy you, all the friends and family members of that person and the person him/herself need to learn more about the condition. This will help you to accept the diagnosis and carry on with life.

You can call Epilepsy South Africa for information and support services. Epilepsy South Africa is a Non-Profit Human Services Organisation that renders services to persons with epilepsy and/or other disabilities as well as persons affected by the condition.

To contact your closest Epilepsy South Africa Branch please call:
0860 374537

National Office Epilepsy Week Campaign

National Office Epilepsy Week Campaign

During this special week the organisation plans to reach 280 000 people with epilepsy through messages by following the following plan:

  • Day 1 activities will enable Epilepsy South Africa National Office to present an information package to 38 000 vehicles which are likely to contain between 105 000 and 140 000 people. This will be achieved by handing out 38 000 information packs to commuters traveling on the National Toll roads of South Africa as well as in the areas of Branch activity during this time. We also trust that people receiving this information package will be sharing the message with passengers.

The information package: will contain information about epilepsy to educate and raise awareness about epilepsy. (a. Why people get epilepsy, b. How to care for a person that is having a seizure and c. How to live with epilepsy)

We will present information about the condition creatively and directly to 38 000 commuters on the N1, N4 and N3 highways and to commuters in the operational areas of our Branches. Thousands of people will be traveling on these toll roads to holiday destinations, sporting events, cultural festivals or religious gatherings. This is an ideal “captive” audience, traveling by car, bus or taxi with nothing to do for at least five hours, providing an ideal opportunity to let the power of boredom work for awareness raising and the Epilepsy South Africa brand. The audience is ready to accept and interact with our message.

We will be handing out our information packages at the following toll plazas:

  • Carousel Plaza: on the N1 – 120 km north from Johannesburg
  • Mooi Plaza: on the N3- 428km south of Johannesburg
  • Kroonvaal Plaza: on the N1
  • Middelburg Plaza: on the N4 -165 km east of Johannesburg
  • Day 2, 3, 4 and 5: Sending a short educational message to public subscribers via SMS, but also through Facebook, Twitter and our Electronic Newsletter.

The successful implementation of this project (awareness raising of epilepsy as a condition) will ensure that society in general take responsibility to change myths and misconceptions surrounding epilepsy, especially since any person can develop epilepsy at any stage of their life.

We will sincerely appreciate any exposure or partnership toward reaching the goals of this project and look forward to enabling this powerful project to “Share Epilepsy!” during a “Soccer Drenched” communication period.

 Siyazenzela (“we are doing it ourselves”)

Siyazenzela (“we are doing it ourselves”)

 A Rural development programme for people with epilepsy in the Eastern Cape
By James Mkalipi

People living with epilepsy in the Eastern Cape have been marginalised to an extent that they have even been refused access to welfare services. This extends even to people presenting symptoms of either intellectual or physical disability. In response, Epilepsy South Africa decided to start vegetable gardens for families to ensure food security which enables people with epilepsy to follow their medication regime effectively by combining medication with a balanced and nutritious meal grown in their backyard garden. Ultimately this will lead to the development of income generation projects for people with epilepsy to ensure economic independence for them and ally viable and provide to their families.

James Mkalipi (Eastern Cape Development Worker of Epilepsy SA) reached an agreement with the village headman resulting in the first eight vegetable gardens for people with epilepsy being piloted in Mhlabathi village next to Potsdam in Mdantsane.

Gardening training was based on the principles of organic farming using natural resources and obviating the need for expensive chemicals like pest control and fertilizer.

During the course of the programme, participants enjoyed an opportunity to share knowledge, learning to understand each other’s shortcomings better and, most importantly, they were reminded of ancient methods such as praising the Creator for the land, praying for rain and offering thanksgiving for the harvest. This proved to be an eye opener for many of the participants, especially when they understood the reasoning behind these ancient ways.

These natural organic farming methods taught participants a lot regarding nature conservation and using naturally decaying products to produce manure, compost etc. In this way the project has grown beyond growing vegetables and preparing the land to include the importance of planting herbs with medicinal application (for example using yarrow for stomach ache).

Participants have taken pride in and ownership of the programme by ensuring implementation of their new knowledge in their gardens. Seeing growth and development in their gardens has boosted the self esteem of many participants. This is evident from the comments made by one villager: ”It is true that knowledge is more empowering than giving handouts to a person. I feel honoured to be part of the team and would like to thank the Almighty for bringing help to us when in distress. I am proud to be the first member of many to come that have benefited from this programme.”

We invite people with epilepsy and/or their caregivers interested in being trained in natural farming to contact James MKalipi at 073 521 7630 or 043 722 1811. You are also welcome to refer any other question to James.

U-Epilepsy South Africa uzimisele ukunizela ngenkonzo zakhe ezilalini SIMAHLA kwaye abantu abanemeko yokuxhuzula kufuneka baxhamle kolu phulo.

Epilepsy South Africa is committed to rendering services in rural areas of the Eastern Cape and urge people with epilepsy to benefit from this campaign.



 by Marina Clarke

A WED Capacity Building Seminar was hosted in Pretoria from 24 to 27 May 2010 by the Women’s Entrepreneurship Development and Gender Equality (WEDGE) project of the International Labour Organisation (ILO). The seminar was attended by people involved in promoting entrepreneurship and WED from organisations in South Africa and Lesotho, including BDS Providers; SME support institutions; government, business and women entrepreneur support units; employers’ and workers’ organisations; women entrepreneur associations and disabled persons’ organizations (DPOs); micro-finance and other financing institutions targeting women entrepreneurs.

The overall objective of the project is to create an enabling national environment for the promotion of women’s entrepreneurship development and gender equality to support poverty reduction and job creation initiatives in South Africa.

The project is funded by the Norwegian Government and aims to strengthen the national institutional capacity of the Government of South Africa; to redress existing gender imbalances in enterprise development. This is done through approaches and activities aimed specifically at women and small enterprise initiatives that are gender sensitive.
The overall objective of the WED guide is to promote the full participation of women in entrepreneurship and economic development, and facilitate the creation of new and better jobs by women entrepreneurs. It seeks to build institutional capacity in WED, particularly in developing countries. It has a strong focus on business creation, formalization and expansion.

The content includes the following topics:

  • ILO’s approaches for supporting women entrepreneurs, including basic principles on gender equality in SMME development and WED;
  • A framework for offering effective business development services to promote women’s entrepreneurship;
  • The role of lobbying and networking in promoting women’s entrepreneurship;
  • Various tools and instruments for promoting WED;
  • Assessing the needs, challenges and gender-related issues of growth-oriented women entrepreneurs choosing to expand their business operations

Epilepsy South Africa will be rolling out the WED Capacity Building by hosting a training of trainers seminar in Cape Town from 16 to 20 August 2010. This event will form the cornerstone of our Women’s Month celebrations.

Look for roll-out of the WED Capacity Building programme in your area. For more information contact Carmen Armstrong, National Project Coordinator, WEDGE South Africa on (012) 818-8000 or armstrong@ilo.org or Marina Clarke on (021) 595-4900 or economicdev.no@epilepsy.org.za.


The focus of the SETYSA project on social enterprise development is aligned with the Decent Work agenda, in particular the pillars on employment creation and social protection respectively, and the links between these two pillars. Thus, the ultimate objective of the project is to encourage the creation of employment opportunities within social enterprises, as well as the social value delivered by the goods and services that they produce.

Social entrepreneurship is an emerging field at both academic and practitioner level and there are no clear agreed definitions of social enterprise and related concepts. The emerging ILO approach used for the purposes of this project draws on the 2001 Report of the Director-General: Reducing the Decent Work Deficit – a Global Challenge, in which social enterprises were described as those which create “sustainable market solutions to social problems”. This approach does not categorise or exclude social enterprises on the basis of for-profit versus non-profit status or other legal form. It focuses on those enterprises with a viable business model, at least in the long term, which may incorporate a variety of income streams, in line with the ILO understanding of the term ‘sustainable enterprise’. However, the project recognizes that some institutions active in the field of social entrepreneurship use different definitions and that dialogue, capacity building and tool development facilitated through the project need to take account of this dissonance.

The project activities include measures to improve business development service (BDS) provision for social enterprises and social entrepreneurs. The project is working with partners to ensure that social enterprises have access to appropriate services that can help them to establish, improve and grow their businesses. At present, social enterprises often fall between the cracks – they have different needs to conventional non-profit organisations which are sometimes supported by the Department of Social Development or other institutions, but they are often turned away from conventional business support institutions as they are seen as ‘projects’ rather than businesses. This requires efforts to change attitudes as well as ensuring that service providers have the capacity and tools to reach out to, identify and serve social enterprises. As part of this work, the ILO is working with the African Social Entrepreneurs Network to create a Social Enterprise Toolbox for Africa, which contains links to existing resources for social enterprise development, including training materials on which BDS providers can draw to create their own training programmes and other tools. To complement this work, the ILO is working with ASEN and other partners on the development of new tools for social enterprise development specifically tailored for Africa.
Real Development based in Port Elizabeth is currently developing five tools:

  • Introduction to social enterprise training tool: A half-day introductory training seminar on social enterprise with a trainer development programme;
  • Generate Your Social Business Idea (GYSBI) training tool: An adaptation of the ILO Generate Your Business Idea (GYBI) programme with a trainer development programme;
  • Generate Your Social Business Plan (GYSBP) training tool: A training tool designed to allow trainees to develop a social business plan based on an existing social business idea with a trainer development programme;
  • Assessment tool for social entrepreneurs: A rapid assessment tool to assess whether an individual has the qualities and characteristics associated with successful social entrepreneurs.
  • Assessment tool for social enterprises: A rapid assessment tool to assess whether an existing or potential business qualifies as a social enterprise, based on indicators of adherence to key principles such as social purpose and financial sustainability.
  • This process is closely linked to the Motherwell Social Business Plan Competition. This Eastern Cape initiative rolls out in June 2010 with training seminars. The deadline for applications from potential competition entrants (registration forms) is 30 June 2010. Social business ideas will be submitted by 6 August 2010 and social business plans on 22 September 2010. An awards event is planned for 21 October 2010. For more information on the Competition contact Ricardo Dames on (041) 503-9100 or Ricardo.Dames@uyf.org.za.

Epilepsy South Africa will be incorporating a half-day Social Enterprise Awareness Workshop with the WED Capacity Building seminar to be held in Cape Town from 16 to 20 August 2010.

For more information contact Marina Clarke at the Epilepsy SA National Office on (021) 595-4900 or economicdev.no@epilepsy.org.za.

The work of the Social Enterprise Development Targeting Youth in South Africa (SETYSA) project seeks to support the ILO’s constituents and partners in their efforts to promote social enterprise development in South Africa, supporting progress towards a conducive enabling environment and the development of appropriate business development service products for potential social entrepreneurs, with a particular but not exclusive focus on youth entrepreneurs.

Always assisting those with epilepsy!

In Uncategorized on June 15, 2010 at 7:36 am
Dear Reader

I hope that you will enjoy our May newsletter as it contains useful information about tax deductions for people with disabilities and new epilepsy devices, which will be of assistance to people with epilepsy. You can also read more about the services and programmes of Epilepsy South Africa, such as training which took place in the Mpumalanga & Limpopo Branch and planned activities for National Epilepsy Week (21 – 27 June 2010). Other articles include our planned advocacy workshop for August 2010, as well as information on ways in which members can become more involved with Epilepsy South Africa. We have included an inspiring story from Johan Schade, a person with epilepsy, showing what people with epilepsy can do and achieve despite living with epilepsy.As winter has now commenced I hope that everybody will look after their health even better. This is especially important for people with epilepsy, as illness and fevers could trigger more seizures.

I thus wish you a warm and cosy winter ahead and look forward to meeting many of our readers at our upcoming events during 2010.

Noëline de Goede

May E-news Contents:

Training in Dulstroom: Epilepsy South Africa Mpumalanga/Limpopo

Training in Dulstroom: Epilepsy South Africa Mpumalanga/Limpopo

March and April brought a lot of training to our offices – hopefully this will bear fruit in the near future!

Noting the article on the supervisory training conducted at the Gauteng Branch on 16 and 17 March (published in April) – our delegates reported that the management team was fortunate to attend a supervision training course at our Springs regional offices in March that was also attended by other Epilepsy branches. Everyone felt that it was not only a great opportunity for learning, but also for connecting with our colleagues in other regions and discussing ideas and challenges in our field. The majority of our management team returned with renewed energy and started implementing useful ideas in their departments on returning to work.

During the last week in March we hosted a First Aid Training course over a two day period attended by business owners and health care workers in Dullstroom. It was to our advantage that more than 10 of our employees were able to attend the course for FREE!! The course was facilitated by a couple who used to own an ambulance service in the Eastern Cape, now employed by Mopani Pharmacy in Nelspruit. This combination made for some interesting stories, some of them really GORY! From the photos you can tell we all had a good laugh when it came to the trauma board training.

Next in line was the fundraising training presented by the Fundraising Forum which was a fantastic experience for our fundraising team!!

Lastly our Director and Chief Community Developer presented training in Epilepsy Identification and Management for the Department of Social Services. 33 delegates attended and thoroughly enjoyed the course, especially when presented with the opportunity to interview seven of our residents as a practical exercise.

The tiling of the Dullstroom centre is still in progress and we have been very fortunate in receiving a sponsor for 200 bags of tiling cement from Roadex Construction in March.

We can feel the change in season here in Mpumalanga and are preparing for our first two events coming up in May. We hope to make a good impression on our donors at our annual Friends of Epilepsy Tea on 6 May 2010.

Please contact Riette or Elsa at the fundraising and marketing office with any queries on (013) 254-0161.

List of qualifying physical impairment or disability expenditure and criteria for diagnosis of disability – SARS

For example, if a person in a wheelchair buys a hand-held GPS, the cost of the hand-held GPS will not qualify under section 18(1)(d) of the Act even though the expense is in the list. This is so because the hand-held GPS is not directly connected to this person’s disability and hence neither necessarily incurred nor incurred in consequence of the disability. In the case of a person who is, for example, visually impaired the cost of the hand-held GPS may qualify.

Under section 18(1)(d) of the Income Tax Act, 1962 (Act No. 58 of 1962) (the Act), the Commissioner is required to prescribe the qualifying expenses relating to physical impairment or disability with effect from the 2009/10 year of assessment.  The List of qualifying physical impairment or disability expenditure has now been published on the SARS website under http://www.sars.gov.za > Legal & Policy > Publications > Brochures and Guides.

Under the definition of “disability” in section 18(3) of the Act, the Commissioner is also required to prescribe the criteria for the diagnosis of disability.  The criteria for the diagnosis of disability are contained in form ITR-DD – Confirmation of Diagnosis of Disability, which has been published on the SARS website under http://www.sars.gov.za > Legal & Policy > Publications > Forms.

Taxpayers may print the form ITR-DD from the SARS website themselves or go to any SARS branch office where they can print the form ITR-DD for him or her.

For any queries in this regard, either one of the following persons can be contacted:
Koenraad Burger: Tel: (012) 317 2778
Cell: 082 466 4945
e-mail: kburger@sars.gov.za
Nathi Nxele: Tel: (012) 422 5074
Cell: 083 703 9992
e-mail: nnxele@sars.gov.za
Issued on behalf of Legal & Policy

Expenditure prescribed by SARS and which is necessarily incurred and paid for by the taxpayer in consequence of a physical impairment or disability is deductible in terms of section 18 of the Act, subject to certain limitations. The terms “necessarily incurred” and “in consequence of” are not defined in the Act. Therefore, they retain their ordinary dictionary meaning. This means that a prescribed expense does not automatically qualify as a deduction by mere reason of its listing. The expense must also be necessary for the alleviation of the restrictions on a person’s ability to perform daily functions.

My hike with epilepsy for Epilepsy, by Johan Schade

My hike with epilepsy for Epilepsy, by Johan Schade

 My name is Johan Schade and I have lived with epilepsy from a very young age. I have undergone almost every possible treatment to control my seizures, but still experience very bad seizure episodes. My parents did not allow me to grow up as a child with a disability but encouraged me to live a “normal” life, enabling me to compete in many sporting events. I finished school, completed my two years compulsory military service and started a 21-year career with the South African Revenue Service (SARS) in 1987. During my career I caused several motor vehicle accidents and decided after the last one to cut up my driver’s license and never put my hand on a steering wheel again. In May 2009 I was medically boarded.

I am a very keen hiker and I have hiked almost every possible major hiking trail in South Africa. At the end of March 2010 I received news that my father (who lived in an old age home in Zeerust, North West Province) was ill and in financial trouble. Given that I also had a dream to walk the length of the South African coastline to benefit a charity, I decided to hitchhike a roundtrip of 2,800km as a pilot run to see if I would be able to cope.

With R200 in my pocket I started the journey on 11 April 2010 in Port Elizabeth. I was picked up by the staff of a security company and told them my story. After a quick discussion the guards gave me back my “taxi fee” and wished me well on my journey.

I met Eugene next who told me the sad story of his life raised in a foster home. He shared an emotional story of his life and how he was neglected by his parents to the extent that he chose rather not to make contact with them at all. He opened up to me, a total stranger and at the end of the trip in Cradock I realized how fortunate I was to have met this young man who taught me so much in only 90 minutes.

The next people to cross my path were Speelman (an electrician) and Roger Gutzmann who was starting his own company. He gave me a lift to Kroonstad where I spent the night. On 12 April 2010 I met a number of people and when I arrived in Klerksdorp I had to walk about 5km to the Hartebeestfontein / Lichtenburg turnoff. There I met Kallie who took me to Lichtenburg and called his friend asking that he wait for me so that I could travel with him to Zeerust. I hopped out of his vehicle into another taxi and arrived in Zeerust at 12h30.

On Monday 17 April 2010 I made my way back to Port Elizabeth and met a number of people with interesting stories. However, one man (whose name evades me) stands out. I had been standing on the road to Orkney for almost two hours without anybody stopping and did the next best thing by walking over to a black gentleman who stopped to buy a cold drink at a café. When I ask him for a ride he said that while he was going in that direction he could probably only take me a few hundred meters before his damaged bakkie broke down. Even moving a few meters was fine with me since I had experienced a very small seizure earlier and simply wanted to get off the road for a while. It was only when the vehicle started moving that I realized it was so badly damaged that we could hardly hear each other. He dropped me two km further and I walked for about another kilometer before he returned and offered to drive me to Orkney. He simply would not take no for an answer and (with his damaged bakkie) dropped me 20 km further. He even refused money and would only accept my thanks for all his trouble.

Along the road I met many people – Pepe, Tshepo, Josef and more. At 23h00 one night even the SAPS helped me along my way. I met a gentleman in Middelburg who gave me lift to Cradock. He also experienced seizures when under stress and I learnt that he is a true believer in the word of God. We exchanged views on what it means to have a personal relationship with God and always allowing God to give you direction in your life. I pointed out that one should always know who the enemy (Satan) was in your life to protect yourself. He told me that he had been involved with witchcraft and noted how easily one could be drawn into a dark world and how difficult it is to return to the true path. From this discussion I learned that if you are destined to know your enemy God will ask a person to do so, but without his blessing it is better not to do so.

On Tuesday 18 April 2010 at 16h00 I arrived back home and completed 2800 km’s.

In conclusion, this trip made an enormous difference in my life. It opened my eyes to South Africa as a friendly country where people are poor, but willing to genuinely give even when they cannot afford to do so. I learned that each one of us have a “hidden disability”. It may be the loss of a loved one causing a barrier in our life, the fear of rejection, AIDS or epilepsy. Every person can live and cope with such disabilities.

I bring this journey to you because I have a dream to assist in collecting funds for an epilepsy office in Port Elizabeth. I believe that by taking hands we may open doors and unleash potential within ourselves and for others in dire need.

I thank our heavenly Father and everyone who trusted there instincts to allow me into their personal space by giving me a lift when I needed it.

For more information please contact us: (021) 595 4900 or email socdev.no@epilepsy.org.za.

“On My Mind:What’s in the Pipeline for Epilepsy Devices”

By Dr Robert Fisher.  The Epilepsy Therapy Project (ETP) hereby grants Requestor permission to use the Material Requested solely in the manner set forth above.

The 2010 Pipeline Conference held in San Francisco 2/25-2/26/2010 provides a window into ongoing research and upcoming possible therapies for epilepsy. The conference was sponsored by the Epilepsy Therapy Project under the direction of Joyce Cramer, with unrestricted educational support from Eisai, Sepracor, UCB, Lundbeck, Pfizer, Upsher-Smith, Cyberonics, Medtronic and an anonymous donor.

Below is a summary of some highlights from the first part of the conference, focusing on devices that work by brain stimulation or direct delivery of drugs or genes to the brain, as well as new approaches to testing in animals before giving treatments to humans. Next month, I will review new drugs in development. Webcasts of the conference will be posted on http://www.epilepsy.com in a few weeks so you can hear all the details.

Vagus Nerve Stimulation: Cyberonics®, the company that manufactures vagus nerve stimulation, is developing on-demand magnet stimulation that will automatically detect a seizure and activate the magnet. It will include a seizure logging feature as a diagnostic tool. The company also is looking at development of novel stimulation parameters. It is hoping to broaden compatibility of the device with MRI, currently limited to a few MRI machines.

Deep Brain Stimulation of Thalamus: I was the principal investigator for a Medtronic®-sponsored trial of deep brain stimulation for epilepsy, called “SANTE,” an acronym for “stimulation of the anterior nucleus of thalamus for epilepsy.” Stimulation proved effective in reducing numbers of partial seizures with or without secondary generalization within 3 months, with further reductions in seizures through 3 years of evaluation. The device is under consideration by the FDA.

Responsive Neurostimulation: Neuropace® has developed an implantable device that can detect seizures and deliver a responsive stimulation to counteract the seizure before it fully develops. The device is entirely implanted into an artificial segment of skull. A study showed efficacy and safety of the system, and benefit was maintained long-term. Further details will be available in the near future, and the device will be under consideration by the FDA.

Seizure Advisory System: NeuroVista® has developed implantable hardware and software that can signal a patient about the likelihood of a seizure in the near future, by use of computer algorithms for analyzing ongoing EEG. Successful studies have been completed in dogs with seizures, and the company is about to enter clinical trials. If seizures can be predicted with some reliability, then the impact of the seizures can be minimized, or treatments initiated at the time of a warning.

Laser Surgery: Visualase® is a company specializing in laser ablation systems, previously used for tumor removal. The laser technology may have applicability for removal of a seizure focus in the brain. Clinical trials are expected to begin in 2010.

Seizure Alert Watches: Two companies, Smart Monitor Corporation® and BioLert®, presented designs of wearable watches that can detect the shaking characteristic of tonic-clonic and tonic seizures. Once a seizure is detected, the watches can send signals to pre-designated cell phones, pagers or other alarm devices. This type of notification may facilitate earlier help during a seizure and peace-of-mind during the quiet times. Clinical trials are underway at Stanford and New York University.

Brain Cooling: The University of Kansas and Flint Hills Scientific® presented a prototype of a probe that could be implanted into brain tissue and cool it to 21°C within 60 seconds. Cooling may provide a reversible way to block brain cell activity, and attenuate seizures.

Local Drug Application to Brain: Orally ingested medicine circulates through the entire brain and body; whereas, local application of a drug to the relatively limited network of brain cells giving rise to seizures might spare the rest of the brain and body from side effects. I performed some of the initial investigations of this technology in laboratory models of epilepsy. Investigators at New York University have carried the idea forward by developing a pump and catheter device to infuse seizure medications under the dura, which is the membrane lining the brain. The drug chosen was muscimol, an analog of the brain’s main inhibitory neurotransmitter, GABA. The technology has shown promise in rodents and primates and is now moving towards clinical trials in people with epilepsy.

“Fuss-Free” EEG: Recording of brain waves (electroencephalogram, EEG) is harmless, but sometimes irritating and upsetting, especially to children. A company called Advanced Neurometrics® has developed an EEG system that can apply electrodes via a comfortable cap, with application time in less than five minutes and without leaving any residue on the hair. Quality of the EEG so obtained is good. Product launch is expected in 2011.

Magnetonanoparticles for MRI: Magnetic resonance imaging (MRI) is a very useful clinical procedure that measures magnetic signals in the brain produced by resonance of atomic structures and converts the results to visible brain images. A company called Epinano® has taken this a step farther and linked tiny magnetic particles to chemicals that bind to particular parts of the brain. This enables MRI to visualize special functional systems in the brain, including possibly those associated with epileptic seizures.

Screening Models: H. Steven White, Ph.D., Director of the Anticonvulsant Drug Development Program at the University of Utah, and Stephen Collins, M.D., Ph.D., President of Neurotherapeutics Pharma®, point out that 13 new antiepileptic drugs have been developed since 1993 and many more are under development. All of these drugs have been developed by screening them in animal models of seizures. Models are better for identifying acute seizure blocking ability then for identifying long-term benefit in chronic epilepsy. Current models also are of limited value for detecting side effects. There is a substantial need for better models and better ways to screen for possibly useful antiepileptic medications.

Translational Models of Epilepsies: SynapCell® is a preclinical contract research organization that develops chronic animal models of epilepsy for the purpose of testing new antiepileptic drugs. These models have been invented and validated in academic research laboratories, but the company makes them conveniently available for testing of possible new antiepileptic compounds.

Dog Epilepsy Model: Dogs develop epilepsy more often than do people, and dogs also require treatment for their epilepsy. In the process of treating dogs, information can be obtained that is useful for treating people with epilepsy. The company CanCog Technologies® does not produce epilepsy in dogs, but links a network of veterinary neurologists in the Toronto, Canada region to study antiepileptic drug treatment in canines.

Genetic Models of Epilepsy: Epilepsy can be caused or made worse by genetic factors. The Texas Institute of Genomic Medicine has developed a library of cell clones with more than 10,000 unique gene variants. This library can be used by researchers to determine the role of individual genes in epilepsy or in action of antiepileptic drugs. It is relevant because 99% of human genes have a mouse counterpart and the Institute has available about 70% of existing mouse genes for study.

Blood Test for Epileptic Tendencies: There is presently no blood test that assists with a diagnosis of epilepsy. A company based at UCLA called NeuroIndx®, collected blood tests from rats before and after induction of status epilepticus. About 100 genes were associated with a risk for subsequent development of epilepsy. This approach may be developed to screen people who are at potential risk for epilepsy after brain injuries.

Gene therapy: Gene therapy is a method of designing a gene to replace a defective gene or to supplement a useful function by inserting a gene. Designer viruses usually are used to carry the fabricated gene into brain cells. A company called Neurologix® has developed a method of gene therapy that increases neuropeptide Y (NPY) in hippocampus. Hippocampus, a structure deep in the temporal lobe of the brain, is often involved in seizures. NPY can reduce the excitability of hippocampus. Studies underway with patients suggest that this gene technology is feasible and safe.

Convention-Enhanced Toxin Delivery: Certain toxins may selectively destroy brain cells involved in producing epilepsy. A company called MedGenesis Therapeutics® has collaborated with Dr. Michael Rogawski of UC Davis to develop a method to infuse a selective toxin into brain, by gently pressurizing fluid through a catheter. This causes the toxin to travel through the brain by convection, which is considerably faster than by passive diffusion. It is being tested in animal models and may have applicability to humans.

Inhaling Your AED: Alternate routes besides oral and intravenous administration are of potential value for treating epilepsy. Medkura® is developing an inhalation device to deliver anti-seizure medications. Inhalation of anesthetic drugs has rapidly controlled seizures in mice, and may become a possible new route of therapy for people.

Adenosine-Releasing Implants: Adenosine is a natural neuromodulator released by brain cells after a seizure. It has an inhibitory effect on local tissue. Legacy Research® developed microparticles with embedded adenosine and implanted them in the brains of rats. Electrical stimulation was applied to artificially induce seizures. Rats with inactive particles not containing adenosine developed seizures within 10 days, but seizures did not develop in rats with implanted adenosine particles. This raises the possibility of drug-impregnated implanted nanoparticles into brains of people to prevent or treat epilepsy.

Conclusion: Treatment of epilepsy is no longer limited to drugs, surgery or the ketogenic diet, but now also includes devices. The vagus nerve stimulator is an existing effective device for treating seizures in some people. Many other devices are in development to prevent, ameliorate, terminate, screen drugs for treatment of, predict or notify of seizures. You cannot get these potential therapies now (except for vagus nerve stimulation), but some of these devices should become available in the next 2-10 years.

* Conflicts of interest for author: Dr. Fisher is a paid consultant for NeuroVista® and SmartMonitor® and has done sponsored research for Medtronic®

Ó2003-2010 Epilepsy.com. All rights reserved.


National Epilepsy Week 21-27 JUNE

National Epilepsy Week 21-27 JUNE

By Drikie Snyman National Marketing and Public Relations Officer.

With the South African National Epilepsy Week around the corner, you will find us as busy as ants trying to build something bigger than ourselves. The theme for this year is “Sharing Epilepsy!” and powerful communication will flood South Africa to share awareness about the condition.

With cell phones becoming one of the most competitive communication tools, we simply had to use this opportunity for National Epilepsy Week. Should you be interested in becoming part of our group to receive sms text (text only) messages – please send an email with “SMS” in the subject line, and include your name, surname and cell phone number in the body. You are welcome to unsubscribe from this service at any time, and are charged normal cell phone rates for replies, but none for receiving our messages. The email can be sent to marketing.no@epilepsy.org.za

If you have access to social media tools, you are welcome to talk epilepsy! We are currently featured on Facebook, Twitter and have a regular Blog that is updated with relevant news.


During April Epilepsy South Africa had a wonderful opportunity to form a partnership with the Medical School of the University of Cape Town. This partnership involves the training of five Fourth Year medical students who were taking part in a project which entailed the social aspects of epilepsy, especially seizure management. The students would (in turn) train ten people (community workers, home-based carers and community development workers) who would each train ten people. Thus, 100 people would be trained, eventually result in raising awareness about epilepsy in the community and an opportunity for community members to do epilepsy talks in the community during National Epilepsy Week (June).

Future events in May include our Children’s Week event centred around “Celebrating our abilities”. The event is aimed at an intergenerational event consisting of parents, children and the elderly celebrating the abilities of children with disabilities through activities speaking to the rights of people with disabilities and artistic performances by the children and the elderly.

by Ruth Nugent-Social worker Epilepsy South Africa Western Cape

Epilepsy South Africa Membership

Epilepsy South Africa Membership

By Drikie Snyman National Marketing and Public Relations Officer.

Epilepsy South Africa continues to assist people with epilepsy to live to their maximum and true potential. We therefore aim to be of service to people with epilepsy and those affected by the condition. The past year was a busy one filled with many activities, including the development of our National Strategic Plan. This allowed us to specifically look at the future of the organisation and how we can improve our service delivery to the community at large. We will definitely focus on the rights of people with epilepsy again this year, with an emphasis on inclusion issues to build up toward a National Campaign in June when we celebrate National Epilepsy Day on 21 June.

We also aim to build the capacity of families, community members and even companies to support people with epilepsy. We appeal to our members to become more involved in our programmes and will therefore keep you updated on activities within the organisation throughout the year through an appropriate communication channel selected by you.

We suggest your involvement in the following activities:

  • Compilation of Epinews (a bi-annual newsletter by people with epilepsy, for people with epilepsy – to be published by the end of May 2010)
  • Casual Day (a national Fundraising event benefiting a broad spectrum of people with disabilities)
  • Our online newsletter sent monthly to the email address of your choice
  • National Epilepsy Week
  • International Day of People with Disabilities
  • The Annual General Meetings of Epilepsy South Africa and the Epilepsy South Africa Educational Trust

We thank you for your ongoing support and remind you that you may choose to become a member of the National Office or the Branch closest to you. Please contact them for information on the latest membership renewals.

You are a very important part of our team and we would therefore like to stay in contact with you. We value your interest and regular feedback.


Advocacy and Rights Based Conference in August 2010

Advocacy and Rights Based Conference in August 2010

By Karen Robinson National Social Development Manager

Epilepsy South Africa will be hosting a three day advocacy and rights based conference in August 2010 in Cape Town. The aim of the conference is to empower people with epilepsy, especially young people with epilepsy. Participants will learn how to be self advocates and what civil rights entail. They will also be asked to voice their needs and the challenges that they experience on a daily basis.

It is time for adults and youth with epilepsy to reclaim their place. Highlighting their life stories, their needs and the discrimination and stigma they experience on a daily basis will create awareness and understanding within South Africa. It is time to stop being complacent, take control of our lives and do something positive about the issues affecting us. If you want to make a difference by being an advocate, collaborate with other people with epilepsy and mobilize yourself as national adult and youth epilepsy forums JOIN OUR ADVOCACY and RIGHTS BASED CONFERENCE.

For more information and bookings please contact us:
086 037 4537 or (021) 595 4900 or email socdev.no@epilepsy.org.

Another year end – and a new beginning!

In Uncategorized on June 15, 2010 at 7:32 am
Dear Reader

 The newsletter 31 March 2010 was our financial year end.  We facilitated our National Directors and National Board meetings during March and completed  our national strategic plan for implementation during 2010/2011.On 1 April 2010 the National Office personnel commenced revision of our 2009/2010 and 2010/2011 business plans, gearing towards achievement of our annual programme goals and objectives.I want to congratulate the individuals who completed the Argus Cycle Race for Epilepsy South Africa. They are Steven Densum, Tim de Villiers, Caroline de Villiers and Charl van Rooyen. I also want to thank Novartis who provided funding to make Steven Densum’s dream come true, namely to cycle in the Argus Race as a person with epilepsy. Further gratitude goes to the Novartis cyclist who also cycled this race in Epilepsy South Africa branded clothing. The exposure this brought to Epilepsy South Africa and epilepsy as a condition is sincerely valued.

I am very excited about the planning for National Epilepsy Week and National Epilepsy Day 2010, the upcoming National Advocacy Conference and the commencement of our first direct service point in the Eastern Cape Province. You can read more about these events and programmes in this newsletter and the May 2010 newsletter.

I hope that our Christian readers enjoyed a blessed Easter, that our Hindu readers enjoyed a blessed Ramanavami, that our Jewish readers enjoyed a blessed Pesach and that all our readers will enjoy a peaceful Freedom Day on 27 April 2010.

Noëline de Goede

April E-news Contents:

Disability and Human Rights Campaign

Epilepsy South Africa, Western Cape

Epilepsy South Africa dedicated a week of activities to raising awareness about disability and human rights, to interlink with the celebration of Human Rights day on 21st March. The campaign (posters and pamphlets) was aimed at creating knowledge and understanding about human rights and disability from the 19th – 26th of March.

As part of our campaign, we targeted libraries, community health centres and hospitals within the areas of the following districts Athlone, Wellington, Cape Town, Wynberg, Bellville and Mitchells Plain. A total number of 14 libraries, 8 Community Health Centres, 1 hospital, 3 exhibitions, the Athlone Department of Social Development, Huguenot College, Care Craft Lansdowne, Care Craft Wellington and Care Craft Mitchell’s Plain were reached.

In addition, a short presentation about the campaign was done at Ukhanyo Primary School in Masiphumelele, and an invitation was extended to the learners to create posters illustrating what they understood about rights. There will be a short presentation of these posters at a later date.

Overall, the campaign was a success as people appreciated and advocated for future enlightenment of the rights.

The disability and human rights campaign is a series of campaigns planned by the Western Cape ranch for 2010. You will receive notice of the next campaign that will take place in May “Children’s Week” and June “Youth Day”.

Disability and Human Rights Campaign  

Discovery Foundation - partner to the Eastern Cape!

Discovery Foundation – partner to the Eastern Cape!

by Karen Robinson (National Social Development Manager) and James Mkalipi (Eastern Cape Development Worker)

Epilepsy South Africa National Office would like to express gratitude to the Discovery Foundation for awarding us the necessary funding to establish the first direct Epilepsy South Africa service point within the Eastern Cape.

A site visit with the Funder was done at the offices of REHAB as James Mkalipi will be rendering services from their premises as an Epilepsy South Africa Satellite Office. The purpose of the visit by Mrs Rachel Dlamini was to congratulate Epilepsy South Africa National Office for receiving the Discovery Foundation Excellence Award. James Mkalipi was introduced to Mrs Dlamini and the meeting focused on the marketing of Epilepsy South Africa services and the implementation of the Eastern Cape Development Programme.

For more information please contact James Mkalipi +27 043 722 1811(ext 205) or email at development.ec@epilepsy.org.za

Picture: Front Row left to right: Rachel Dlamini (Representative of Discovery Excellence Award), Zininzi Mpurwana (Director REHAB) and Karen Robinson (Epilepsy South Africa National Social Development Manager)
Back Row left to right: Beth Burton (Consultant), Fatima Abrahams (Epilepsy South Africa National Fundraiser), James Mkalipi (Epilepsy South Africa Eastern Cape Development Worker)


Epilepsy South Africa Eastern Cape satellite office

By Karen Robinson (National Social Development Manager) and James Mkalipi (Eastern Cape Development Worker)On the 15 February 2010, Epilepsy South Africa National Office, appointed James Mkalipi as an Eastern Cape Development Worker. James Mkalipi will be manning our satellite office in East London.

On the 25 March 2010 the National Social Development Manager, National Fundraiser and Eastern Cape Development Worker visited East London to sign a contract with REHAB Director and to facilitate a site visit with our programme funder.

The key objectives of the Epilepsy South Africa Eastern Cape Satellite Office are as follow:

  • To address the advocacy needs of people with epilepsy and provide advocacy training
  • To establish vegetable gardens in some of the areas of the Amathole Region
  • To plan, establish and develop income generation programmes
  • To provide training in terms of entrepreneurial development
  • To ensure service delivery towards people with epilepsy and other disabilities
  • It was agreed that REHAB will provide counselling, information and other social development services to people with epilepsy. REHAB will also create awareness and give information about epilepsy and other disabilities. Epilepsy South Africa National Office will provide information and training to REHAB staff members and volunteers.

After completion of orientation at the National Office, Mr. James Mkalipi will commence service delivery on 19 April 2010 from the Epilepsy South Africa satellite office, based at REHAB in East London.


Supervisor training at Epilepsy South Africa Gauteng Branch

Supervisor training at Epilepsy South Africa Gauteng Branch

By Marina Clarke (Deputy National Director)

On 16 and 17 March 2010 the National Office presented supervisory training for a group of 21 participants from the Gauteng, Mpumalanga & Limpopo and Free State & North West Branches at the Gauteng Regional Office in Springs.

The need for this training was identified through interaction between the National Office and Branches. Too often workers are promoted into supervisory positions without the benefit of appropriate and relevant training. It is important to remember that the supervision of staff and workers require a very specific skill-set.

The training programme sought to build a shared understanding of supervision and the role of supervisors. As such the training intervention provided new knowledge on supervisory techniques, including leadership, goalsetting, planning and organising. Participants were also skilled in human resource topics such as productivity, motivation, teambuilding, delegation and communication. Specific attention was also given to problem solving, decision making, time management and self-management.

At the end of the training programme each participants designed an action plan to implement their new knowledge and skills. Implementation will be monitored during the next six months to ensure transfer of knowledge and skills into the workplace.

For more information about training programmes available from the National Office contact Marina Clarke on (021) 595-4900 or economicdev.no@epilepsy.org.za.


Argus 2010 completed, but our Champions not!

Argus 2010 completed, but our Champions not!

by Drikie Snyman, National Marketing and Public Relations Officer National Office Epilepsy South Africa

The weather forecast for the 2010 Pick and Pay Argus Cycle Tour did not favour the participating cyclist this year. On the actual day of the event, it turned around and Cape Town experienced a wonderful day. Wind is however always on the list of things to be prepared for when you are cycling this prestigious race.

Epilepsy South Africa’s four Champions took part and wore their branded (Novartis and Epilepsy South Africa) shirts, with pride. We could share in the excitement in seeing Steven Densum’s dream come true and are still convinced that obstacles can be turned into potential. He motivates that his epilepsy is a condition that pushes him to achieve more as a person. In partnership with Novartis we could assist Steven, to complete the Argus. He did this in 4h35min.

Congratulations Steven and thank you for doing us proud!

The other three fellow cyclists joined in for additional exposure to the organisation and the condition as well as the opportunity to raise funds. This is important as Epilepsy South Africa depends on donations to maintain and improve services to people with epilepsy and other disabilities.

Our champions’ profiles are still available on the net. To support them please visit the following:
Steven Densum

Tim and Caroline de Villiers

Charl van Rooyen

Noeline de Goede (National Director), Caroline de Villiers (Argus time 5h30min), Tim de Villiers (National Chairperson – Argus time 4h56min), Muneerah Humzah (Novartis representative), Steven Densum (Argus time 4h35min), Charl van Rooyen (Argus time 5h56min), Karen Robinson (National Social Development Manager)


National Epilepsy Week June 2010

By Drikie Snyman National Marketing and Public Relations Officer.

With South African National Epilepsy Week around the corner, you will find us as busy as ants trying to build something bigger than ourselves. “Sharing Epilepsy!” is this year’s theme and powerful communication will flood South Africa to share awareness regarding the condition.

With cell phones becoming one of the most competing communication tools, we simply had to utilise this opportunity for National Epilepsy Week. Should you be interested in becoming part of our group to receive sms text (text only) messages – please send an email with “SMS” in the subject line, and include your name, surname and cell phone number in the body. You are welcome to unsubscribe from this service at any time, and are charged normal cell phone rates for replies, but none for receiving our messages.

The email can be sent to marketing.no@epilepsy.org.za

If you have access to social media tools, you are welcome to talk epilepsy! We are currently featured on Facebook, Twitter and have a regular Blog that is updated with relevant news.


Sports and Recreation for People living with epilepsy

Sports and Recreation for People living with epilepsy

 (By Karen Robinson-National Social Development Manager)

Having the opportunity to participate in sport and recreational activities is important for everyone, including people with epilepsy. Lack of understanding about epilepsy and also how it affects each person differently, can mean people with epilepsy are cautioned against taking part in some activities where this is not necessary. In fact, with qualified supervision (where appropriate) and applying the necessary safety precautions there are little that you should avoid if you have epilepsy.

Active recreational activities can improve both mental and physical health and should be encouraged for people with epilepsy. Very rarely, exercise is a trigger for seizure activity, but for the vast majority of people living with epilepsy, the benefits of exercise far outweigh the risks.

Water sports, including swimming, snorkeling, jet-ski riding, windsurfing, and sailing, are risky for people with epilepsy, but with a few accommodations they can be safely pursued. A few tips will follow at the end of this article.

Contact sports such as football, rugby, basketball, and ice hockey are generally safe for people with seizures. However, family members may worry about the chance of head or bodily injury, which is common in these sports. People with epilepsy have no greater chance for injury during these sports than people without epilepsy. The chances of serious injury are small compared with the positive effects of team participation.

Most individuals with epilepsy can safely exercise in a gym and use exercise equipment. For those who have uncontrolled seizures, a buddy system may be needed when using equipment like treadmills or bicycles. For example, a person, who has occasional complex partial seizures only exercises on the treadmill when her/his friend is present. The friend supervises the exercise to prevent injury if she/he has a seizure.

Activities like scuba diving, rock climbing, skydiving, hang gliding, and mountain climbing should be avoided by individuals with uncontrolled seizures. These sports require full concentration, and any episode of loss of consciousness may lead to injury and possible death.

Recreation, water and contact sports safety tips:

  • Always have a “buddy” for activities that require considerable exertions that are likely to cause injury.
  • Take frequent breaks and drink plenty of water.
  • Wear protective clothing (elbow or knee pads, helmet, protective eyeglasses or goggles) whenever possible.
  • When bike riding, avoid busy streets; ride on bike paths or side streets.
  • Always wear a medic alert bracelet or necklace or carry a medic alert card.
  • At least one person participating in the activity or observing it should be aware of the possibility of seizures and know basic life-saving techniques. 
  • Always wear a high-quality, properly fitted life vest when near the water to help prevent drowning.

Recreational activities are very important for socializing and happiness. Achieving the balance between a safe life and an active life is possible by just making a few adjustments in sports activities.

For more information contact Karen Robinson at 021 595 4900 or email socdev.no@epilepsy.org.za

(Picture used with the courtesy of freefoto.com)

A big move, in a big year!

In Uncategorized on June 15, 2010 at 7:24 am
Dear Valued Subscriber to the Epilepsy South Africa Newsletter

 Moving into our new office on 15 February 2010 turned out to be an immense job.  I am glad to report that after only a week at our new premises we have managed to unpack and sort most of our files and furniture and we are fully up and running.  Please note our new contact details in this newsletter. We simply had to include another picture as well.
Epilepsy South Africa nationally is currently focusing on completing business plan implementation for the financial year 2009/2010 (ending on 31 March 2010) and planning for business plan implementation during the 2010/2011 financial year commencing on 1 April 2010. During 2010/2011 Epilepsy South Africa nationally will focus on continued and increased good governance, marketing, financial sustainability and service expansion. To achieve all our goals and implement all our service programmes requires a strong teamwork approach, personnel capacity and financial resources.
 I can testify that within Epilepsy South Africa we do not lack any enthusiasm or teamwork. We will however focus on building up our financial resources and our personnel capacity to ensure that services can be delivered and sustained.  I would thus like to thank each and every one of our supporters: You are very special people who assist us in turning obstacles into true potential for people with epilepsy and/or other disabilities. Some of you support us by providing encouragement, others by providing your time and skills and some by donating materials or financial contributions. How you support us is not important; the important fact is that you have given of your resources, time, energy and yourselves to assist people with epilepsy in South Africa and that makes you a hero in our eyes!
During March 2010 Epilepsy South Africa will host our policy and position charter review meetings (1 – 5 March 2010). We will also host our National Directors meetings and Strategic Planning meeting from 22 – 26 March 2010 and our National Board meeting on 27 March 2010. If you would like to obtain more information about these meetings please do not hesitate to contact me.
 I would also like to place an open invitation to any person who would like to learn more about epilepsy and Epilepsy South Africa to please contact me. I will provide you with the information you require and arrange a visit to any of our Branches or the National Office depending on your needs. In this way we can only strengthen our service base, increase knowledge about epilepsy and decrease discrimination towards people with epilepsy. (My contact details are provided below)

I hope you will find our March newsletter interesting and inspiring and look forward to sharing more news with you in April 2010.
Noëline de Goede


March E-news Contents:

New premises and contact detail of the National Office:

New premises and contact detail of the National Office:

 by Noeline de Goede, National DirectorIt is wonderful to share our new contact information with you:

  • Physical address: Ground Floor, Syfin House, Fairway Close, Parow, 7500
  • Postal address: PO Box 12100, N1 City, 7463
  • Telephone number: 021 595 4900 (international +27215954900)
  • Fax number: 021 595 4901 (international +27215954901)

Please note that if you have mail on the way to the old address – it will reach us as a forwarding system has been put in place for the next few months.


Champions to the test on 14 March:

by Drikie Snyman National Marketer and PROAccording to the Weather Department our four Backabuddy champions will be facing a 40° level of discomfort on the day of the Pick and Pay Argus cycle race.
Steven, Tim, Caroline and Charl still needs your encouragement so please think of them. We sincerely appreciate the personal involvement of these individuals and will look out for them on television.

They will be cycling in the Epilepsy South Africa and Novartis apparel and we will make sure to include a picture of the group in our April edition. The picture included is of Tim de Villiers, our National Office Chairperson, taken during the Pick and Pay Cape Argus 2009.

To view their profiles on Backabuddy, click on the link provided below:
Steven Densum

Tim and Caroline de Villiers

Charl van Rooyen

 Champions to the test on 14 March:

Epilepsy South Africa Health and Wellness Week 16th -19th February

There was also a focus on promoting healthy sexual lifestyles. Female and male contraceptives were distributed and a short presentation on the application of both male and female condoms was done and questions on the contraceptives were asked and answered.

As part of promoting healthy and nutritious eating, Epilepsy South Africa secured a donation of fresh fruit and vegetables which were packed and distributed to the workshops and projects.

Overall the week was a success with important information on living a healthy lifestyle being distributed. Based on the success of this week Epilepsy South Africa will be making Wellness Week an annual event!

by Anthea Emmanual, Social Development Manager Western Cape
Epilepsy South Africa Western Cape Branch celebrated its first Health and Wellness Week which coincided with the Healthy Lifestyles Awareness Day being celebrated on the 21st February 2010. The focus of the week was to promote healthy lifestyles through a poster and pamphlet display that was set up at all of our workshops, income generation projects and at the Regional Office.The topics that were covered included how to eat healthily, looking after your physical and mental wellbeing, providing information on how to ensure that your water is safe to drink, the dangers of smoking and how to care for your baby. A number of pamphlets that were distributed highlighted common conditions such as TB, HIV/Aids and the management thereof.

Service Delivery – Expanding in the Western Cape

Service Delivery – Expanding in the Western Capeby Ruth

Nugent – Social Worker at Epilepsy South Africa Western Cape BranchThe Branch is very excited about the fact that the new social worker will be covering areas that we have not worked in before, namely the Wynberg and Cape Town Districts. Our mission within these areas is to create awareness and educate people about epilepsy as far and wide as possible. The communities in which the social worker will be working in the respective districts have been chosen due to expressed needs for our services:

In the Wynberg District the social worker is doing public education and counseling at the major Community Health Centers namely Masimphumelelo Clinic in Ocean View and Lady Michaelis in Plumstead. In addition, Lavender Hill and Seawinds Community Health Centres have been made drop-off points for epilepsy information.

Linkages have been formed with NGO’s in this district such as the Disability Coordinator of the Department of Social Development, Valley Development Project, New World Foundation, Inclusive Education Western Cape, the Multi Disciplinary Forum in Lavender Hill/Capricorn, the Western Cape Education Department (Circuit 1 Metro South Education District), the Centre for Early Childhood Development, Rapcan and Sunrise Special Care Centre. The Social Worker is still developing more networks.

The same services are being rendered in the Cape Town District at major Community Health Centers namely Woodstock Community Health Centre, Dunoon Community Health Centre, and Robbie Nurock. In addition, Spencer and Chapel Street Community Health Centres have been made drop-off points for epilepsy information.

The Social Worker has also linked up with some NGO’s within the district namely the Department of Social Development Disability Coordinator, the Cape Town Association for Persons with Disabilities, Disability Workshop Development Enterprise and Cape Mental Health Society. The Social Worker is still developing more networks.

Very soon we will be seeing bigger community events within these districts and we look forward to rolling out our other specialised programmes in the respective Districts.
Joyce Kanhema – Social Worker


Opening of new offices:

by Tertius Meyer, Public Relations Free State and North West Branch.During the year the demand for our services has increased more and more in the community of Tumahole (the township in Parys). Problems were experienced with service delivery as the offices in Parys were not sufficiently accessible, especially in terms of home-based care. The people that we serve are poor and far away from our offices in Parys.The Thabang Society started a community centre in the old Mabatho Primary School building and thanks to this development we are now able to have an office in Tumahole. The offices in Tumahole have two permanent staff members, nine Volunteer Lay Counselors and 29 Volunteer Home-Based Carers.

The following services are offered by this satellite office:

• Home-Based Care
• Community Development
• Mental Health
• Education and Advocacy
• Volunteer Management
• Food Security
• Victim Empowerment
• Entrepreneur Development

This new and exciting expansion makes it possible for us to reach more people in a cost-effective manner, especially because this office is accessible to the Tumahole community.

For more information about the office please contact Sr. Nellian van Niekerk at our Branch Offices in Parys on (056) 811 5959.

Jet Community Awards:

The Jet Community Awards invites entries annually from citizens of South Africa, Botswana, Namibia, Lesotho and Swaziland, specific to those individuals or organisations that have made a compelling contribution to the wellbeing of their communities.The 2010 Awards will recognise community projects and grass roots organisations in the four categories of:

  • “Education”, honouring organisations and individuals focusing on school-level programmes of excellence in literacy, maths, science and technology;
  • “We Care”, organisations/individuals who focus on (a) people with disabilities, specifically in terms of care, support and empowerment, as well as initiatives that deal with people with disabilities and (b) abused women and orphaned and vulnerable children (OVC) specifically affected by the HIV/AIDS epidemic;
  • “Vukuzenzele” which recognises entrepreneurs and development centres that help create jobs and stimulate economic development. There are three awards within this category – namely awarding black (African, Coloured, Asian) women in business; youths in business (18 – 35) and small businesses in rural areas; and
  • “Environmental Waste Management” which recognises organisations/individuals that focus on reducing or eliminating waste production as far as possible so that there is less impact on the environment.

 Nominations and self-completed entries will be accepted. Entry forms are available online at Jet

Entries close on 31 May. 

Epilepsy and Stress:

It is medically accepted that a number of common nonspecific environmental factors may lower a person’s seizure threshold. These include psychological stress, menstruation, poor nutrition, sleep deprivation, alcohol or sedative drug withdrawal, fever, infectious processes, head trauma, and various toxic and metabolic conditions which can disrupt water, pH and electrolyte balance, and energy metabolism.
for the complete article please download the document at http://epilepsy.org.za/download/index.php

By Karen Robinson- National Social Development ManagerWhether you are worried about a big exam or having problems at work, the stress of a situation can trigger seizures. People with epilepsy must take into consideration hunger, lack of sleep, missed medications, fevers or illness and stress as possible triggers for seizures. All these factors can lower a person’s seizure threshold, increasing the likelihood of having a seizure. The seizure threshold is the susceptibility of a person to have seizures.”Although epilepsy may take place in the brain, it may profoundly influence the morale, well-being, self-image and lifestyle…may briefly change the way a person thinks, feels and acts…. But how someone thinks, feels and acts may also change his or her epilepsy.” Dr. Tim Betts. Epilepsy and Stress (British Medical Journal 15.8.92)

Circle of events unfolding!

In Uncategorized on June 15, 2010 at 7:20 am
Dear Readers

 In this edition of our electronic newsletter we share many exciting projects and events with you. It almost feels like we just have good news to share amidst the economic situation South Africa is in. Those of you who read some of the previous newsletters will see the full circle of events as it is unfolding now. I think about Steven Densum doing the Argus, and an emerging story of another cyclist Warren Robertson who will cycle from London to Cape Town in our exciting project called “Epilepsy Enduro”. I am also reminded about our star Kai, who will endeavor to climb another mountain this year. Many obstacles will be scattering in our way in 2010.Please read the different articles and identify something that pulls on your heart string, seeing it is the month of Love! Contact us and share in the accomplishment by achieving what we can do together. I hope that each of you will also enjoy an exciting year where all your dreams will come true. We would love to hear from you, receiving your stories about your challenges; an obstacle overcome and dreams you want to come true. Please send these to Drikie Snyman at marketing.no@epilepsy.org.za.Regards
Noëline de Goede

February E-news Contents:

A first for the National Office, by Noeline de Goede (National Director)

A first for the National Office, by Noeline de Goede (National Director)

The National Office of Epilepsy South Africa has never owned its own building. In the light of what I have to announce I want to thank Mr. Ellis Meacham from Kiddies Rides, the owner of our rented office space in Observatory for years of support. The staff number and services rendered by the National Office has more than tripled since 2004 and our rented office space is far to small to accommodate us any longer. We also have a vision to open our own training facility, offering relevant and affordable training to the NPO and Corporate sector and Civil Society. This will not only strengthen the NPO sector but will also provide us with a some income toward being financially sustainable as a NPO.We were introduced to fantastic premises called Syfin House (picture included), of which the ground floor is available for purchase. We will be moving offices on 15 February 2010 and will at first rent the office space. We have until June 2010 to raise the money needed (R3,800,000) to purchase the ground floor of Syfin House. These premises will accommodate all our services and will also allow us to open our training wing. If any person or company can contribute to our building fund, it would be highly appreciated. You are welcome to contact me directly to make a contribution. (Tel. 021 – 447 3014 or E-mail: nationaldirector.no@epilepsy.org.za )


High rollers, High stakes!

High rollers, High stakes!

by Wynand du Toit, Epilepsy South Africa National OfficeHelping people with epilepsy has always been a serious business, but now we have stepped it up to a completely new level:The first ever Epilepsy South Africa Celebrity Poker Challenge will be held at the Grand West Casino near Cape Town during April this year. This exciting tournament will form part of the launch of the new poker facility at Grand West where high rollers will take on celebrities in a battle of brainpower and skill at the poker table.

Proceeds from the challenge will help improve service delivery to people with epilepsy and other related disabilities in South Africa. We are extremely thankful for this opportunity, and for the interest shown.

Now for the really good news:

  • You too can rub shoulders with the big guns at the poker table! Space is limited – only 80 players including the celebrities. Contact me at fundraising.no@epilepsy.org.za for information on how to book your seat and take on some national celebrities at the game! Invite that friend of yours that is always boasting about his poker skills – remember to be quick.

We trust that this will be the first of many opportunities where different types of people will come together. Where they will fuse charitable giving with fun and fame and remember that the stakes for which they are playing is truly high. High in the need of the people who will benefit.

P.S. We need al the help we can get to arrange this sizeable event. If you or your company would like to sponsor one of the celebrities, please contact me at the above address. This will be a great marketing opportunity!


Epilepsy Enduro!

Epilepsy Enduro!

Another dream that we want to come true, is that of Warren Robertson. Warren is a dynamic and very passionate individual who had the dream of cycling from London UK to Cape Town South Africa. He decided to do this trip in aid of Epilepsy South Africa to raise awareness about the condition throughout the countries which he will be cycling through.  This project will also help to raise some funds for more epilepsy awareness and training programmes in South Africa.Warren will start his journey on 10/10/2010. But more information regarding this amazing trip will be unvailed in the months to come. You will definately find an option for you to get involved, as we are currently working on the smaller aspects of activities like:

  • Buy the right to cycle with Warren on stretches of the route
  • Sponsor different sections of the route in Rands, Cents
  • Become a donor on Backabuddy, and support Warren in this effort
  • Support Warren on his route (cheering, waving, food, accommodation etc)
  • Attending the final arrival event in Cape Town

Warren, Epilepsy South Africa thank you for your willingness to take on this huge challenge in aid of epilepsy


Our Champions on Backabuddy!

by Wynand du Toit, Epilepsy South Africa National OfficeDo not forget to go online and view our ambassadors or champions. So far five people chose Epilepsy South Africa as their Cause to Support through the sport they do. You can do this too, or support them and in that way take part in changing the lives of people living with epilepsy and other disabilities.With the Pick ‘n Pay Cape Argus cycle tour just 37 days away, we are excited about the opportunity presented to us in a partnership with Steven Densum (a person living with epilepsy), and Novartis (Pharmaceutical Company) in order to get Steven’s dream of cycling the “Argus” fulfilled.  He will cycle the Cape Argus and be joined by three other champions, but it does not stop there – Warren Robertson, stepped forward and offered to cycle from London to Cape Town for epilepsy – as shared in the Epilepsy Enduro article. 

To view their profiles on Backabuddy, click below:

Steven Densum

Warren Robertson

Tim and Caroline de Villiers

Charl van Rooyen

Please help us to see how much these heroes can raise together. Funds will be utilised for increased service delivery to people with epilepsy and other disabilities. Visit the Backabuddy site and make a donation by sponsoring either or all of our cyclists. Challenge the people you know to do the same.

If you are interested in becoming more involved in making a change in people’s lives, whether as a sponsor, donor or volunteer, please contact me so that I can show you how easy it is to become a hero of 2010 yourself


News from Epilepsy South Africa News from Epilepsy South Africa Mpumalanga/Limpopo


Here at the Dullstroom centre we could not have asked for a better start to 2010! We are the very fortunate receivers of a fantastic donation from the Mckenzie Trust – they are repainting our office building, fixing the roof and adding a much needed store room. The work started on 18 January 2010 and has had an infectious impact on all staff resulting in a major clean up opertion. The fundraising office has been cleaned up and cleaned out with a new coat of paint – all made possible by some kind donations from our community in Dullstroom .  This made the office look fresh and friendly. The offices of the community development team are also under going a much needed face lift and this work is being done by the Dullstroom workshop.The month of January also brought training in various skills and programmes, headed up by our director Mariana Holtzhausen. We kicked of with a day of training for all staff involved on a programme for our stimulation group. Two intensive days were spent on communication training with all the centre and sick bay staff. The first Board Meeting was held on 23 January 2010 attendance was good. Planning meetings with the various projects are underway and should all be over and done with by middle February.The tiling of the Dullstroom centre is still in progress and Paul Simon one of the residents at the Dullstroom centre, who is now employed by the organisation is heading up the tiling project.

Thanks to another kind donation the Dullstroom centre will have new table cloths for the dining hall and we have also received bedding and lovely lamps.

The Elandsdoorn centre started the year with an open day for the parents of the residents on 11 January 2010, one of the topics that were discussed was the safety of the residents, also an appeal was made to parents to visit their children/ family members as often as possible. Peter Tjale our Centre manager at Elandsdoorn has also completed all his project meetings and has informed us that the cleaning up of the Elandsdoorn Centre in January was successfully completed.

We are looking forward to a busy year, all our dates for fundraising events and other Epilepsy functions have been set, together the staff of Mpumalanga and Limpopo are committed to make the most of 2010!

Please contact Riette or Elsa at the Mpumalanga/Limpopo Fundraising and Marketing office with any queries on 013 2540161.


Epilepsy South Africa - Western Cape

Epilepsy South Africa – Western Cape

by Anthea Emmanual, Social Development Manager Epilepsy South Africa Western CapeThe year started off with the Social Development Department excitedly planning various activities for the year ahead. Our first announcement is the inclusion of two new employees in our Regional Office family. We warmly welcome Naiemah Williams, social worker and Shireen Rule, social auxiliary worker to our expanding social development department. We look forward to the expansion of our services with the new additions.As our office is growing, so are our services and planned events. In addition to our counselling, public education and empowerment programmes, we have additional exciting plans that we would keep you informed about. The months ahead include a focus on a Healthy Lifestyle day in February which will focus on living a healthy and well balanced lifestyle. The information will be cascaded through a poster campaign which will be visible at Regional Office, Protective Workshops and the Income Generation projects. A Children’s Day event in Athlone in May will focus on celebrating the children’s abilities and educating them on their rights through an activity based programme, a Youth Sensitisation Day in our newly serviced area of Masiphumele in June will focus on merging both special needs and mainstream schools in a day focused on educating the learners about disability and promoting inclusion. An exciting Women’s Day Celebration in August has been planned which focuses on promoting women’s health.

We are extremely excited and motivated in making a success of 2010!


Walking the extra mile for emerging Community Based Organizations

Walking the extra mile for emerging Community Based Organizations

 by Tertius Meyer, Epilepsy South Africa Free State and North West.Epilepsy South Africa Free State and North West took a step beyond our normal line of duty by assisting young and emerging Community Based Organisations to apply for funding from the National Lottery Distribution Trust Fund. This ‘reaching out’ is based on the principal of UBUNTU. It speaks to the very essence of being human. To give high praise to someone, we say “Wena, u no buntu”; He or she has ubuntu, implying that the person is generous, hospitable, friendly, caring and compassionate and willing to share what he or she has.This reaching out was not just to obtain funding, but we also assist the organizations through skill transfer in matters of financial planning & management, fundraising, networking, and good governance.  Through forming partnerships with these organizations, Epilepsy South Africa has opened new doors in ensuring the community can access high quality services.The organizations we have partnered with come from the Free State and the North West Provinces and are:

  1. Lekgabeng Disabled Centre in Taum, for capital expenditure and running costs
  2. Motheo Crèche in Mokwallo for running costs
  3. Talitha Kumi Luncheon Club in Mokwallo for equipment and running costs

Apart from these organizations we also assisted a young theater group to obtain funding for a festival to take place in March 2010 in Parys. The group is known as Impucuko Theatre Production and consists of you people from the Tumahole area. They have assisted us in the past by using the performing arts to create awareness about Epilepsy and HIV/AIDS. With everything they did for us it was a nice change to assist them in getting the funding they need.

Thanks to the National Lottery Distribution Trust Fund we are able to make a greater and better impact in the community. The financial injection that was given to these organizations amounts to R 1,072,355. Through these partnerships we have shown that our Branch of Epilepsy South Africa is an organization where action speaks louder than words and where the spirit of UBUNTU is lived!!.


New definition offers more tax relief to people with disabilities

However, Ian Olls, a tax services partner at PricewaterhouseCoopers, said: “Although the amended definition does provide tax relief to a wider population of ‘disabled persons’ it is our view that this amendment is unlikely to have a significant impact on the tax collected by the fiscus.”

SA Revenue Service (Sars) spokesman Adrian Lackay said Sars expected the impact to be “tax neutral”, in other words, it would have no impact on the tax take.

“The provisions are being introduced to avoid and reduce the number of tax disputes Sars had to contend with in the past, arising from claims for medical deductions,” Lackay said.

“The provisions are designed to provide certainty and to clarify what people with disabilities can claim for.”

The previous definition was replaced as from March 1, 2009, with a new definition of “disability”, which Bendel said was “in most cases much wider than that of the handicapped person definition”.

He said previously only five disability groups were eligible: people who were blind; deaf; required an artificial limb; required a wheelchair, calliper or crutch; or suffered from a mental illness.

He believes that under the new dispensation, several other disabilities are included, among them diseases of the liver, kidneys, heart and lungs, HIV/Aids, diabetes “and many more. Broadly a disability is defined as a moderate to severe limitation of a person’s ability to perform daily activities as a result of a physical, sensory, communication, intellectual or mental impairment.”

A discussion paper issued by Sars in October last year set out a list of disabilities, which extends to people who have Parkinson’s or Alzheimer’s disease, among other conditions.

But only people with a condition that has lasted or is expected to last for more than a year are eligible for relief. A diagnosis must be made by a registered medical practitioner.

Relief extends beyond medical expenses incurred by the sufferer, according to Bendel.

“Under the new definition, if the taxpayer, his or her spouse or child suffers from a disability then all medical expenses paid by the taxpayer can be deducted for tax purposes. It is not necessary that any expenditure be paid in respect of the disability; the requirement is only that a member of the taxpayer’s family suffers from a disability.”

Bendel said not only could medical expenses be deducted but also expenses incurred as a consequence of the disability, such as school remedial fees and capital expenditure.

Article on 28 February by Ethel Hazelhurst (Journalist for Business Report)A change in the definition of a “handicap” in tax legislation has opened the door to substantial tax relief for people with disabilities in the current tax year, according to tax consultant Eugene Bendel.He estimated that additional claims for tax deductions, including from people suffering from HIV/Aids and cancer, could amount to R5 billion this year.

Welcome to 2010

In Uncategorized on June 15, 2010 at 7:01 am
Dear ReadersI wish you a happy and blessed 2010 and hope that you will remain a supporter of our organisation throughout this year and many more to come. We look forward to joining the rest of our country in the Soccer World Cup events which will certainly be a highlight both in South Africa and the media.

Every year the National Office and Branches of Epilepsy South Africa develop business plans and budgets, detailing the work we plan to implement during the year ahead and the costs of each activity and service. Our financial year starts on 1 April each year until 31 March of the following year. At the present moment we are therefore busy completing the last three months of our current financial year and gearing up to implement our 2010/2011 business plan from 1 April 2010.

The services detailed in our business plans are developed based on direct needs of our clients. These are obtained through needs assessments, discussions, meetings and liaising. However, if you find that our organisation is not rendering a service which you think is vitally important to people with epilepsy and / or other disabilities, please contact us and let us discuss the need for such a service.

The programmes are discussed as a submission below. Added to the programme implementation we will also focus on continued networking and liaison with identified role-players to strengthen our service delivery nationally.

We also share specific dates with you to diarize. We are sure to inform you of many more events and important dates throughout the year which should prove interesting.

May 2010 be a truly fantastic year for all of you!

With thanks
Noëline de Goede

January E-news Contents:

The National Office Programmes for 2010 and beyondThe National Office Programmes for 2010 and beyond

(by the National Director, Noeline de Goede)

During 2010 the focus of the National Office will be:

  • Marketing: In marketing we will focus on continued and increased marketing of Epilepsy South Africa, our services, projects and programmes at a national level.
  • Fundraising: We are proud to announce that Mr. Wynand du Toit joined the National Office personnel on 4 January 2010 as our National Office Fundraiser.  We hope to increase our funds through developing and implementing new fundraising initiatives.
  • Social development: We will continue our development of service points in under-serviced provinces and hope to open a new Branch for direct services in the Eastern Cape during 2010. A critical focal area of our social development programme will be advocacy and we hope to successfully train several people with epilepsy to act as self-advocates within South Africa. We will also focus on increased epilepsy awareness, youth development, the formation of a youth forum, counselling, advice, information and appropriate referrals.
  • Economic empowerment: We will continue implementation of our very successful entrepreneurial development programme, as well as our income generation training, SMME development and training manual development. Our vision is to ensure economic independence for all people with epilepsy and we make this a reality for a small percentage of people with epilepsy and / or other disabilities through our economic empowerment programme. We aim to increase the percentage of beneficiaries through the implementation of our Training-of-Trainers programmes, which allows information and skills to be cascaded to more beneficiaries at community level. During 2010 we will also implement a youth-focused economic empowerment programme, as well as focus on employment equity for people with disabilities within the open labour market and specifically government.
  • Skills development: Through our skills development programme we ensure that all personnel and volunteers are adequately skilled to ensure quality service delivery. We fully comply with skills development legislation.
  • Organisational development / Governance: We are proud to announce that we will launch our new statistical database system during 2010 which will enable us to produce accurate statistical (qualitative and quantitative) records on outputs achieved. I want to thank DVT for their assistance in developing this system for us.  During 2010 we will also continue implementation of our Good Governance programme, which includes revision of our policies, procedures, constitution and regulations. We will continue to recruit Board members as required and training on good governance will also be implemented.


National Office Diary of Events for 2010National Office Diary of Events for 2010

  •  22 – 23 March 2010: National strategic planning meeting
  • 24 – 26 March 2010: National Directors’ meeting
  • 27 March 2010: National Board meeting
  • 21 June 2010: National Epilepsy Day
  • 21 – 27 June 2010: National Epilepsy Week
  • 3 September 2010: Casual Day
  • October 2010: Enduro cycle tour commence.
  • 28 October 2010 : National Wine Auction
  • 3 December 2010 : International Day for Persons with Disabilities


Dr Potgieter visits the South Cape Karoo Dr Potgieter visits the South Cape Karoo 

 (Epilepsy South Africa South Cape Karoo)1 – 12 MARCH 2010

Monday, 1 MARCH:
8.30: Heidelberg Clinic
11.00: Albertinia Clinic

7.30 Talk: Doctors at Provincial Hospital
9.00: Eyethu Clinic
13.00: Alma Clinic

Wednesday, 3 MARCH
9.00: Thembalethu Clinic, George
14.00: Sedgefield Clinic

8.30: Day Hospital
13.30: The Crags Clinic

7.30 Talk: Doctors at Provincial Hospital
8.30: Out – patients at the residential facility of EPILEPSY SA.

Saturday, 6 MARCH, KNYSNA
8.00-10.00: Monitor the medication of the residents at the residential facility of EPILEPSY SA

Monday, 8 MARCH
8.30: Zoar Clinic
13.30: Calitzdorp Clinic

8.00: Bridgton Clinic

7.30 Talk: Doctors, Provincial Hospital.
9.00: Bridgton Clinic: Farm patients and Bongolethu patients
12.00: Dysselsdorp Day Hospital

8.00: Beaufort –West Day Hospital (all day)

9.00: Murraysburg Clinic (all day)


Let's be happy in 2010:Let’s be happy in 2010:

 (by Anthea Emmanual, Western Cape Branch of Epilepsy South Africa)

Epilepsy South Africa Western Cape would like to take this opportunity to welcome everyone back into the New Year of 2010! We hope that everyone had a relaxed, exquisite festive season and that you are looking forward to the New Year.

In opening the New Year we would like to share the following quote to set off the exciting 2010!

John Ruskin said, “In order that people may be happy in their work, these three things are needed: They must be fit for it. They must not do too much of it. And they must have a sense of success in it.”


Our heroes of 2010!Our heroes of 2010!

 (by Wynand du Toit, Epilepsy South Africa National Office Fundraiser)

With 2010 kicking off as a fantastic year for all sporting codes in South Africa, it is with excited expectation that we look forward to an opportunity to showcase South Africans as positive ambassadors, not only to the Soccer World Cup, but also of a really diverse people filled with heroes of positive endurance.

At Epilepsy South Africa, one of the greatest privileges of working with people with epilepsy and other disabilities is to regularly discover the hidden heroes within our communities. People facing enormous challenges every day and still living positively, working hard to make life just that little bit easier for others in need. We all know of the celebrities that proved this possible, but we often do not realize the heroes are also among us.

Epilepsy South Africa aims to partner with these individuals that live their lives to the full, many of them diagnosed with epilepsy themselves. With the Pick ‘n Pay Cape Argus cycle tour just around the corner, we are excited about the opportunity presented to us by one of our local heroes, Steven Densum.

Steven lives in Welkom and is a person with Epilepsy that overcame every obstacle in his way since he was diagnosed. He has decided to partner with Epilepsy South Africa in creating awareness and raising much-needed funds through the Backabuddy system and by participating in the Argus on 14 March. More cyclists are supporting our cause and we would especially like to thank our chairman, Tim de Villiers and his wife Caroline, as well as Charl van Rooyen for making themselves available on the Backabuddy system.

Please help us to see how much these heroes can raise together in this fun. The current combined target is set at R22, 000 that will be utilised for increased service delivery to people with epilepsy and other disabilities. Visit the Backabuddy site and make a donation by sponsoring either or all of our cyclists. Challenge the people you know to do the same.   Know that the need is real, and the need is now. Epilepsy South Africa is entirely dependant on initiatives like these to sustain our services. Know that you are helping people with epilepsy and other disabilities turn obstacles into true potential through your involvement.

Which one will you support, Steven , Tim and Caroline , or Charl ?

If you are interested in becoming more involved in making a change in people’s lives, whether as a sponsor, donor or volunteer, please contact me so that I can show you how easy it is to become a hero of 2010 yourself.


Funding partners makes a difference!Funding partners makes a difference!

 (By Tertius Meyer, Epilepsy South Africa Free State)

Since Gary Westwood became the director of Epilepsy South Africa, it has been a dream of his that we can go on the road with new and reliable vehicles. It became clearer and clearer that our current transport was not reliable, especially with deteriorating road conditions. The Venture that we are using has 908 000 km on the clock. When taking this high mileage and the area that we cover (the whole of the Free State and the North West Province) into consideration you can understand that we need more and new vehicles.

Our thanks go to the National Lottery Distribution Trust Fund for sponsoring three new vehicles and the DG Murray Trust in Cape Town for donating the Double Cab for our Home Based Care program. We are now able to do our work in safe and trustworthy vehicles. We also received money to buy three scooters for the Home Based Care work. These vehicles go a long way in ensuring quality service delivery, safety for the staff and a saving on the budget. Thank you National Lottery Distribution Trust Fund and DG Murray Trust for supporting us so that we can start this year on such a positive note.


Outeniqua wheelchair challenge.Outeniqua wheelchair challenge.

 (By Epilepsy South Africa, South Cape Karoo)

We are awaiting the 2010 Outeniqua Wheelchair Challenge which is due to take place in George on Saturday 20 February with great excitement. A team of 8 athletes from The Crags will take part in the event and their fellow Group of Hope club members will accompany the team to cheer them on.
Residents from the Epilepsy SA Centre attend the OWC every year where they act as volunteer marshalls.

This event started out with only 27 participants in 2002 and has grown into a major competition attracting international athletes. Last year’s race took place in pouring rain but this did not deter the brave athletes and their supporters who simply enjoyed taking over the streets of George to show what they were capable of.

If you are in the South Cape on 20 February do come to this spectacular event.


Seperation and ChildrenSeperation and Children

 (By Karen Robinson National Office Social Development Manager)

Like any other child, children with epilepsy can also experience separation anxiety. Here are some tips to handle it”

At some point, most of us have been witness to a painful scene: A child’s separation-anxiety meltdown. It goes something like this: A three-year-old cries “Don’t leave me here! I wanna go hooome!” as his/her frazzled mother/father attempts to loosen the iron grip she/he managed to establish on her/his leg. Clearly, no amount of lighthearted “won’t-today-be-fun” banter on the drive to preschool had managed to stave off this episode. As parents we need to prepare ourselves and our children and therefore we probably dared to believe she/he was prepared, hoping against hope for a nonchalant kiss on the cheek and breezy wave goodbye. But nope, as this is very traumatic for parents and the child you’ll find yourselves in an octopus-like clutch and a lot crying of a child (parents) with separation anxiety. Most of us can relate to or identify with the scenario described above, especially with our children being enrolled for the first time in daycare or preschool. Due to work obligations, we as parents also have to leave them when attending meetings, courses or training in other provinces or countries.

Although a strong relationship with parents helps children to cope with their anxiety as the time for goodbyes approaches, first “big” separations can be challenging for child and parent alike. As soon as babies have the capacity to remember a parent, beginning at approximately seven months of age, many children weep as though they’ve been eternally forsaken when mom or dad walks out the door. Toddlers cling koala-like to their mothers when they sense her imminent departure.

Separation fears may be more intense in children who are temperamentally “slow-to-warm-up” and have difficulty making transitions or entering new situations. They can experience a variety of emotions such as anger, guilt, jealousy, confusion, hurt, and fear. Preschool children may regress to outgrown behaviour like whining, crying, and bed-wetting, or may become more aggressive and demanding. So what can be done to minimize the chance that your child will suffer from fears of seperation?

Parents often feel guilty and distressed about their child’s natural reaction to a separation and may unwittingly prolong and reinforce a separation reaction. There are two ways in which a parent can go wrong here: By leaving too soon and by not leaving soon enough. You walk a fine line, and choosing the perfect moment to make your move can be tricky. But whatever you do, be sure to say goodbye. Don’t just sneak out as soon as your child’s attention is diverted. On the other hand, don’t linger. Reassure your preschooler through your words and your actions that everything will be fine in your absence and that you will come back for him/her soon.

A favourite toy or blanket can help your child feel more confident and secure. Research shows that children who are given “transitional objects” cry less when they are separated from their parents. These children are also able to explore their environment more actively and focus on and learn new tasks better than children not in possession of a favourite item.

Suggestions for Parents

  • Before you leave, tell the child you are going, and mention when you will return. It may help to say something like “…and I’ll pick you up at 11 o’clock just like last week” to enable her to imagine the duration of her separation from you. In order to bear being apart, a child must know that the parent will return.
  • After you say you are leaving, go! If you linger because of the child’s whining, then you are teaching your child that whining is an effective way to get what he/she wants.
  • Expressing affection for your child is appropriate, but separation is made more difficult if you, the parent, verbally or non-verbally express ambivalence, guilt, worry, or uncertainty about leaving the child. Be confident! The parent’s emotional response to separation is a common cause of the child’s emotional response.
  • Practice with brief separations first. Show your child that you return reliably.
  • Don’t be late picking your child up! Be on time, or even a little early. Children can get very distressed, feeling abandoned if all the other children have been picked up and they’re “left alone.”
  • Provide a consistent routine that children can count on, and stick with it. Most adults feel more secure when they know what’s going to happen next. Children have an even greater need for routine.
  • Allow children some time to get accustomed to new people. Kids feel more secure when they know and trust their caregivers. If your child is slow to adapt to new situations, she/he may even need a few weeks to transition. Patience is key.
  • Separation anxiety is normal; to children, separation is the most threatening of all situations. On rare occasions, however, it may be a red flag that there’s a problem that you should know about. Talk to your child and your daycare provider about what your child experiences at daycare. Perhaps she/he gets teased by other children or is afraid of the class’ pet guinea pig. Maybe she/he thinks the teacher looks like mean Uncle Albert! Whatever the cause, when separation anxiety persists it makes sense for you to be proactive and address the problem.
  • Never threaten a child with separation. Parents sometimes resort to threatening little children with “going away” in order to frighten them into better behaviour. It’s true that this often results in some improvement in the child’s conduct, since the possibility of losing a parent is so upsetting that he will do anything to avoid it. But these threats may also produce extreme anxiety in the child. Basically this kind of threat tells the child that you would be willing and able to leave him at any time. Bad behaviour, he realizes, might cause him to lose his parents forever. Better for the child to be confident that he can count on your love and support through thick and thin.

To Sum It Up
Be patient and thorough when explaining the reason for your departure to your child. Doing so can help her/him feel confident that you will return, and that she/he hasn’t done anything “bad” to make you leave. Because young children lack a real understanding of cause and effect, they may not be clear on points that you consider obvious. If your child does regress to outgrown behaviour, you may need to adjust your expectations and standards. Strive to establish a consistent routine. Pay particular attention to basic needs such as sleep, meals and exercise. Your child needs to feel that you are dependable, that she/he can count on you to do as you say you will. Use separations as opportunities to build the level of trust between you.


Motivating momentsMotivating moments

By Karen Robinson (National Office Social Development Manager)


Happiness is like a gift that needs to be unwrap. I would like to focus on 12 steps that you can follow to increase your happiness. Personally for me happiness is a sense of wellbeing or satisfaction with you life!!

1 TAKE A PASS ON PERFECTION: The notion that we should “have it all” often leads to increase pressure. We are constantly striving for such a hard-to-reach goal- wanting to be star employee and a great friend etc. This can backfire if you blame yourself when you fall short. Striving for constant contentment is equally unrealistic. If you think you should feel happy nearly all the time, it’s going to make you miserable. The answer is to MANAGE YOUR EXPECTATIONS. The downside of feeling happy most of the time is that you expect to feel that way all the time. So when good things happen, it’s normal, but when bad things happen, it seem catastrophic.

2 BALANCE FUN AND MEANING: Fun without meaning (think body massages) and meaning without fun (frantically working overtime to meet a deadline)- and that happiness comes from some combination of the two. If you constantly choose fun without meaning, you are likely to feel empty inside. If you too often focus on lofty goals, you could wind up depleted and resentful.

3 DON’T TRY TO BUY HAPPINESS: Sure, money helps, especially in these difficult times of increases of inflation, petrol and food prizes. A nationwide US study published last year in Social Indicators Research found that those avidly pursued possessions were less satisfied with their friendships, families, jobs-even their health-than those who were less materialistic.

4 TRY SOMETHING NEW :Exploring a new interest is entertaining and may lead you to discover other activities over time.

5 GET LOST: If you are feeling unhappy, try to find a flow (state of effortless concentration and enjoyment). Do any activity that energises you and make you feel though time is flying- or even makes you lose track of it- will make you happy e.g. reading a book or taking a relaxing bath.

6 KEEP TRACK OF THE GOOD STUFF : One way to feel happier is to recognise good things when they happen. If you have trouble counting your blessings, try to keep a gratitude journal. Several studies show that people who record what they appreciate experience greater happiness and less anxiety-even better sleep. Gratitude is also an excellent antidote to grumpiness.

7 SHARE THE LOVE: Contented people’s happiness experiences most involved connecting with someone. The fastest way to improve your relationships is to set time aside inviolable time for them.


9 CHOOSE TO CHOOSE LESS: Too much choice can cause anxiety and lead people to self blame if their decisions don’t turn out well as they had expected. LEARN TO ACCEPT GOOD-ENOUGH OPTIONS.

10 INTRODUCE YOUR BODY TO YOUR MIND: You can increase happiness just by articulating it. So get your body involved when your feeling good.

11 BE MORE FORGIVING: So how do you let go of anger and resentment towards others? Take into account the stresses that contributed to the wrong doer’s behaviour. Remember the person’s positive traits and consider requesting an apology. If you motivation starts to falter keep in mind that forgiving is really a gift you give yourself.

12 PICK OUT THE POSITIVES: Many people say things happen for the best. I do not agree with that but some people are able to make the best of the things that happen- and that is a key to happiness. One way to do this is by reframing your thoughts.


Close 2009 and open 2010The festive season has come and gone and everybody at Epilepsy Mpumalanga enjoyed a safe and peaceful holiday. The organization’s administrative offices and other projects closed on the 11th December 2009 and re-opened on 11 January 2010.

The residents and day workers from Sakhelwe visited their families over the festive season. Unfortunately about 23 of the residents remained in the centre over the holiday period.
On 27 November 2009 the staff members of Elandsdoorn and Dullstroom centres were once again invited to tea, hosted by Mariana in her beautiful garden, for our end of the year function.

On 6 December 2009 we had our annual closing function for residents, with the ladies from Helping Hands treating the residents to a sumptuous meal – a truly South African braai with salads and a tempting Christmas trifle as dessert. The residents were all very excited as this was also the day that they put up a wonderful stage production organised by all the Dullstroom staff. The variety concert was enjoyed by the ladies of Helping Hands and kept them talking about it all through the holidays. It was a closing function to remember.

We were fortunate to end a very busy year with a beautiful wedding at our centre of two of our own residents – Harry Van Der Merwe and Aletta Le Roux took the brave plunge into holy matrimony!! Harry’s sister put on a great spread and all the staff were involved in decorating the hall and the tables. The wedding party was small and intimate and attending the wedding was a very special way to end of 2009.

The first week back at work proved to be challenging as all the projects started getting their respective houses in order and putting plans in place for 2010. There is a definite energy as we at Epilepsy Mpumalanga are looking forward to a promising year and a very exciting one as we are heading towards the FIFA World Cup Soccer event that is finally here!

Finally we are also fortunate to have another person in our Fundraising and Marketing department, Riette O’Grady joined us on 12 January 2010 and her contact details are as follows:
013 254 0161, 082 8238 289, rogrady@mweb.co.za.

(by Epilepsy South Africa Mpumalanga/Limpopo)

The Dome Business Hub The Dome Business Hub (by Epilepsy South Africa Free State North West)No organization can make a difference in the lives of a growing client base without expanding their services to meet the growing needs within the community.

One of the greatest needs in our area of operation, where poverty is high, is the creation of opportunities for self-employment for people, especially those with a disability.

Recently, through a partnership formed with Internet Solutions, a division of Dimension Data and Chemcity, a wholly owned subsidiary of Sasol Chemical Industries, we were able to open the doors of a new shop called “The Dome Business Hub”.

The main purpose of the shop is to be a hub of activity promoting BBBEE initiatives that will benefit previously disadvantaged persons and people with disabilities. Through this project we have created opportunities for 136 people.

Come and enjoy a nice cup of coffee whilst watching the beneficiaries make soap and candles, in a unique modern ‘Township Chic’ setting. We have a wide variety of coffees just for you, that are prepared by coffee barristers trained at the Coffee Academy in Johannesburg. At the same time you can enjoy the talent of local artists that decorate the walls. This Hub is a tourist’s delight where a variety of arts and crafts are available!!

This wonderful gem of a shop is situated at the entrance to Parys as you enter from the R59 from Sasolburg.