Casual Day to Rock you on 2 September

What does MWEB, Reeds N1 City, Alexander Forbes, PanSolutions, Coronation Fund Managers, ADP Projects, the Ceres Fruit Company, Aegis Media, Capitec Bank, McCarthy Toyota, Tomcat Advertising Agency and many other companies and individuals all have in common?  This year, they are all “Rock Stars” for people with disabilities, by joining Epilepsy South Africa National Office in participating in Casual Day 2011.

 

Every year on Casual Day, thousands of South Africans and their companies participate in this massive support drive for people with disabilities in South Africa.  Year after year, more and more people and companies buy their stickers for R10 to join in this fun and easy campaign, affecting change in thousands of South Africans’ lives.

This year, Casual Day really turns on the heat with the theme “Worn to be Wild”, and challenges people to dress up as their favourite rock stars!  Keep your eyes peeled for the likes of Ozzy Osborne, Shakira, Jimmy Hendrix and perhaps even The King himself – right there in your office!

Be sure sure to get your company involved in the day of laughs and goodwill, by contacting Wynand du Toit at fundraising.no@epilepsy.org.za or 021 595 4900.

Dress up, do team-building, have fun, and most importantly:  Join your fellow South Africans and show your support for services to people with disabilities.

Additional information:

Epilepsy SA is a non-profit organisation, which aims to include all people with disabilities, epilepsy, and people affected by epilepsy, in building the nation’s social capital by providing equal opportunities in realising their potential.

Epilepsy is a very common neurological condition that affects a minimum one in every 100 people. It is characterised by recurrent seizures that occur because of incorrect electrical activity in the brain. There are many different causes of epilepsy: damage or abnormalities in the brain, lead or alcohol poisoning, degeneration, poor nutrition and many more, but in many instances the originating cause is still unknown.

Epilepsy is not a mental illness or psychiatric disorder, it’s not contagious either. It can affect anyone at any age. Many brave people live with epilepsy on a daily basis – and many have proven that the condition can be controlled! Jonty Rhodes, one of South Africa’s greatest cricketers, has lived with epilepsy since childhood. He has shown many sceptics how epilepsy can be controlled to a point of being overcome.

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Epilepsy SA Newsletter – August 2011

FROM THE DESK OF THE NATIONAL DIRECTOR Dear Readers It might be seen as just another one of my duties to write an opening segment for our electronic newsletter, but for me this is truly a privilege to speak directly to the supporters and clients of Epilepsy South Africa.  This month is even more special for me as this will be the last time I get the chance to speak to you.  After 10 years with Epilepsy South Africa I will be leaving the organisation in September 2011 to further my career in the HIV/AIDS sector.  I wish all of you, the personnel, Board members and the organisation well and will carry fond memories of my time with Epilepsy SA.  I still believe that this is a brilliant organisation that can definitely turn obstacles into true potential and I know that together great successes can be achieved for people with epilepsy and all those affected by epilepsy. Once again we offer you a variety of articles in our newsletter. Let us first congratulate Mr Gary Westwood, the Director of our Free State and North West Branch who received the Community Builder of the Year Award by the Community Chest in Sasolburg.  We are very proud of you, Gary as you set a excellent example for the rest of the organisation to follow.  Keep this up! We also wish Gary and his family well as Gary was admitted to hospital for medical procedures which includes a stem cell transplant.  We hope and pray that everything will go well. We also pay tribute to Prof Bryan Kies who sadly passed away on 18 July 2011.  Not only did Prof Kies practice as a neurologist, helping thousands of people over the years, but he has also been very involved with our organisation and the Educational Trust of Epilepsy SA.  He has left deep footprints in the field of neurology and will always be remembered for his passion to make a difference for people with epilepsy.  It was an honour to have known and worked with such a brilliant and passionate person. Marina Clarke at the National Office completed four out of the nine provincial advocacy skills training workshops for small business associations and women entrepreneur associations.  This is hard work and involves a lot of travelling but we can already see the positive impact being made by this training in the various provinces.  The National Office has also postponed our Start and Improve Your Business (SIYB) Training of Trainers workshop to November 2011.  For more information peruse these articles or phone Marina Clarke at 021 – 595 4900. Thank you to Ndileka Mandaba from the Western Cape Branch who provided epilepsy training at the Grahamstown Think Fest on 1 July 2011.  This is not only an example of our willingness to raise awareness about epilepsy as a condition, but also of the exceptional team work and support that exists within Epilepsy South Africa.   The Western Cape Branch also got very creative on Mandela Day (18 July 2011) and partnered with Food Basket for Africa to assist them with preparing and planting a vegetable garden which will in the long run function as an income generation project for the workers of CareCraft Lansdowne. We also bring you some interesting national and international information, including the National Health Insurance, Prescribed Minimum Benefits (PMB’s) to ensure that you know your rights and a great article by Dev Odayar of Siyaka Consulting about employment of people with disabilities and skills development.  We also feature information about a web-based resource “We connect” which could assist people in respect of higher learning.  The International Bureau for Epilepsy (IBE) also announces their gallery for the Jubilee photo competition where you can view all the photos that was entered. In our facts corner we provide you with information about fetal effects of anticonvulsant treatment and more information about Sudden Unexplained Death in Epilepsy (SUDEP), a topic that is often not talked about.  Please let us know what else you would like us to cover in our epilepsy facts corner and we will ensure that your requests are met. As always we also inform you about our fundraising initiatives and I hope that you will buy and wear your Casual Day sticker with pride on 2 September 2011.  Read more about Casual Day in this newsletter and where you can obtain your Casual Day stickers.  You can support Epilepsy South Africa National Office by making your R10 donation – sms the word “true” to 38000. I don’t think people always know and understand how we appreciate every single cent that is donated to us.  We literally have our accountant running down the corridor announcing donations received and we celebrate by jumping up and down and shouting “yahoo!” before sending you a thank you note. Please continue supporting Epilepsy South Africa and please continue raising awareness about epilepsy!  There are still thousands of people with epilepsy in South Africa enduring discrimination or not receiving adequate treatment or services.  Together we can make a difference and turn obstacles into true potential! I wish you well! Noëline de Goede National Director Back to top Advocacy skills training for small business associations and women entrepreneur associations In our previous newsletter we reported on a series of advocacy training workshops to be held in all nine provinces.  These workshops are now a reality with the first four already held in Gauteng, the Northern Cape, Mpumalanga and the Free State. While the target group remained unchanged, the character of each of these workshops differed significantly, reflecting specific issues relevant to the associations in that province. The first workshop was held in Johannesburg on 25 July and attended by 16 participants representing organisations ranging from construction, finance and women entrepreneur associations and alliances.  A special thank you must go to Deloitte who made a training venue available free of charge in support of this work.  Issues raised during the workshop focused largely on gender policies with specific reference to gender equality.  The organisations highlighted specific issues such as literacy, leadership development, job creation through SMME development and local government support.  Some of the organisations participating in the workshop preferred to focus on internal rather than external advocacy, including increasing membership, formalising their operations and the establishment of infrastructure. The Northern Cape workshop was held in Kimberley on 1 August 2011 and attended by 12 women entrepreneurs.  The focus of this workshop differed significantly from the previous workshop held in Gauteng with a clear need being identified to establish a sustainable and vocal network for women entrepreneurs in this largely rural province.  Participants identified tender corruption as a major factor preventing women from starting and growing businesses.  As such, plans are underway to highlight this issue and secure the support of the Northern Cape Premier. 19 participants attended the Mpumalanga workshop held in Nelspruit on 3 August 2011 (representing both the public and private sector) and 17 the Free State workshop held in Bloemfontein on 5 August 2011.  Interestingly, employees of the Department of Labour showed much interest in this workshop given their focus on job creation.  As such, action plans generated during the workshop focused on creating awareness of the realities of employment services in the Free State. Five further workshops will be held in the remaining provinces:  Cape Town (Western Cape) on 11 August 2011 (fully booked);  East London (Eastern Cape) on 30 August 2011;  Durban (KZN) on 2 September 2011;  Rustenburg (North West) on 13 September 2011; and  Polokwane (Limpopo) on a date to be determined. For more information contact Marina Clarke on (021) 595-4900 or via email (economicdev.no@epilepsy.org.za). Back to top Training of entrepreneurial trainers Good news for anybody who would like to undergo training as an internationally accredited entrepreneurial trainer! The National Office has postponed the Start and Improve Your Business (SIYB) Training of Trainers (TOT) seminar scheduled for August 2011 to November. The seminar will be held at the National Office of Epilepsy SA in Parow, Cape Town from 7 – 18 November 2011.  A maximum of 16 candidates can be accommodated. The seminar fee is R7,500 per person and application can be made by contacting Marina Clarke on (021) 595-4900 or economicdev.no@epilepsy.org.za. Back to top July, a month of Independence The 4th of July was the celebration of the American Independence Day and all over the world Americans rejoiced in commemorating their independence. The month of July really kicked off with festivities regarding freedom…  Our own Tata Madiba celebrated his 93rd birthday on the 18th, and the entire world celebrated with him.  We all recalled his story of persistence, perseverance and finally independence and we honored once again our very own Nobel Peace prize winner! With Independence as a topic during July, National Office once again want to remind all our loyal and generous members, subscribers and affiliates, that one of Epilepsy South Africa’s most vital functions is to develop the independence of South Africans with epilepsy and other disabilities.  We need continuous support to do so, and want to appeal to everyone to contribute your R10 sms donations, even if it is only once a month.  You can do this by sending the word “true” to 38000 via sms.  Help us to grow independence into a daily celebration for all South Africans with epilepsy. Back to top Ready to Rock ‘n Roll on 2 September? Casual Day for persons with disabilities are just a few days away and excitement is building to see which Rock Stars wil arrive at the office on Friday, 2 September!  If you, your company, organisation or school have not yet joined in this largest, craziest campaign in support of South Africans with disabilities, you still have time left to order your stickers from your nearest Epilepsy South Africa Branch. National Office  021 595 4900 Gauteng  011 816 2040 Western Cape  021 703 9420 Free Sate & North West  056 811 5959 South Cape & Karoo  044 382 2155 Mpumalanga & Limpopo  013 254 0161 Whether you have a golden voice, sing in the car or in the shower, this year you too can become a Rock Idol!  Order your stickers today and show your support to people with disability in South Africa! Back to top Employers Benefit From Hiring People With Disability There is good reason for people with disability to be employed in the workplace.  South African employers increase their BEE (Black Economic Empowerment) ratings not only when they employ black employees and women, but also when they employ people with disability. Various research studies have been done and statistics compiled on the status of disability in South Africa. Although these studies are sometimes unclear and contradictory, it is commonly accepted that between 10-12% of the population is living with a disability. This means that: • Approximately five million South Africans are disabled • Approximately one in ten South Africans has a disability • Yet, less than one percent of all people employed in South Africa are disabled The National Skills Development Strategy Three target groups of people have been identified as those most vulnerable in South Africa today.  They are black youth, women and people with disabilities. The Department of Labour announced, at the launch of the National Skills Development Strategy in February 2001, that 4% of the learnerships connected to each Sector Education and Training Authority (SETA) should be offered to people with disabilities. This legislation makes it possible for people with disabilities to enter the employment arena more easily, with or without tertiary education.  It is therefore important to start preparing the disabled youth of South Africa for the workplace as early as possible. Legislation In terms of The Constitution, everyone is equal before the law and has the right to equal protection and benefit of the law. The state may not unfairly discriminate directly or indirectly against anyone with regard to race, gender, sex, pregnancy, marital status, ethnic or social origin, colour, sexual orientation, age, disability, religion, belief, culture, language and birth.  Everyone has inherent dignity and the right to have their own dignity respected and protected. The Employment Equity Act seeks to achieve equity in the workplace, by promoting equal opportunity and fair treatment through the elimination of unfair discrimination and the implementation of affirmative action measures for black people, women and people with disabilities. The Code of Good Practice The Code of Good Practice gives guidelines to employers and employees on how to implement the key aspects of the Employment Equity Act in order to ensure that people with disability receive equal opportunities and fair treatment in the workplace. The purpose of the Code is to help employers and employees understand their rights and obligations, and to reduce disputes so that people with disability can enjoy and exercise their rights at work. Disability equity should not be seen only as a corporate social Investment, or as “the right thing to do”. It should also make good business, economic and social sense to employ people with disability. What is Disability? Many people (and organisations) get stuck trying to determine what a disability is – and what it isn’t. As individuals we all have our own perceptions, ideas and opinions on what disability is, and these are based on our experience, exposure, knowledge, biases and prejudices about disability. Disability is a condition caused by an accident, trauma, genetics or disease, which limits a person’s mobility, hearing, vision, speech, and intellectual or emotional functioning. People with disability have a long term or recurring physical, sensory, or mental health problem, which substantially limits their prospect of getting employed or promoted in the workplace. “Long-term” means that the impairment has lasted, or is likely to persist, for at least twelve months. A short-term or temporary illness or injury is not considered to be a disability. A “recurring” impairment is one that is likely to occur again.  A progressive condition is one that is likely to develop, change, or recur.  People living with progressive conditions or illnesses are considered to be people with disabilities once the impairment starts to be substantially limiting. An “impairment” may be physical or mental.  A “physical” impairment implies a partial or total loss of a bodily function or part of the body.  It includes sensory impairments such as being deaf, hearing-impaired, blind or visually-impaired.  “Mental” impairment refers to a clinically recognised condition or illness that affects a person’s thought processes, judgment or emotions. An impairment is “substantially limiting” if it imposes considerable difficulty on the person performing the essential functions of a job. This is determined by considering the extent, duration and impact of the person’s impairment. If a person has more than one condition, these should be considered together to assess if their effect is substantially limiting. The following instances would not fall under the umbrella of disability: • The wearing of spectacles or contact lenses unless the person’s vision remains substantially affected in spite of wearing these visual aids • Compulsive gambling, and a tendency to steal, or light fires • Sexual behaviour disorders • Disorders that affect a person’s mental or physical state, which are caused by the use of illegal drugs or alcohol, unless the person is participating in a recognised programme of treatment • Normal deviations in height, weight or strength, common personality traits, and conventional mental and physical characteristics • Self-imposed body adornments such as tattoos and body piercings Educating Employers to Accommodate People With Disability Site Audit In conjunction with the facilities manager at the Company (or a suitable company representative), the disability management consultant conducts a physical environmental audit of a company’s facilities and offices to identify gaps and assist the company in making reasonable accommodation for individuals with disability. The audit process entails: • Assessing the business area • Doing a risk analysis • Ensuring that occupational health and safety procedures are in place • Clarifying the types of disability that can be accommodated by the business • Identifying suitable job positions for people with disability • Stipulating the reasonable forms of accommodation that will be required • Making adjustments in order to accommodate disabled employees Reasonable accommodation includes, but is not limited to: • Adapting existing facilities to make them accessible • Adapting existing equipment, or acquiring new equipment including computer hardware and software • Re-organising workstations • Changing training and assessment materials and systems • Restructuring jobs so that non-essential functions are re-assigned • Adjusting work time and leave • Providing essential supervision, training and support in the workplace Disability Recruitment Siyakha Search and Selection has successfully completed multiple projects involving the recruitment of people with disability.  In each instance, employers have been educated about the Employment Equity Act and the Code of Good Practice. Employers should reasonably accommodate the needs of people with disabilities in the most cost-effective way possible.  The aim of accommodation is to assist the disabled person to fulfil the essential functions of his or her job in order to enjoy equal access to the benefits and opportunities of employment.  Providing reasonable accommodation also aims to reduce the impact of the impairment on the person’s capacity to fulfill the essential functions of a job. At Siyakha, we present employers with a business case for disability that shows a direct benefit for both the organisation and the disabled employee.  We also train and sensitize the current workforce before a person with disability is brought into the workplace.  This allows for a smooth integration of the individual with disability into the workplace. Fortunately, more and more organisations that recognise the value of employing people with disability are coming on board. Clients at Siyakha Consulting include Sun International, Discovery, Transnet Freight Rail, Standard Bank and Alexander Forbes, amongst others. Quotes “Less than one percent of all people employed in South Africa are disabled” “The aim of accommodation is to assist the disabled person to fulfil the essential functions of his or her job” “It should make good business, economic and social sense to employ people with disability” For more information, please feel free to contact: Dev Odayar Disability Champion Siyakha Consulting (Pty) Ltd people performance productivity Tel +27 11 706 9006 Cel +27 83 233 7983 Fax  086 664 5665 dev@siyakha.co.za http://www.siyakha.co.za           Back to top BRYAN MICHAEL KIES   2 February 1949 – 18 July 2011 We pay tribute to Prof Bryan Kies who sadly passed away on 18 July 2011 Prof Bryan Kies was born at Number 24 Selborne Road, University Estate on 2 February 1949. He earned the MBChB degree with honours from UCT in 1971, and proceeded to specialise in General Medicine and Neurology at Groote Schuur Hospital form 1073 to 1977. In 1976, he was admitted to the Fellowship of the College of Physicians of South Africa, and was subsequently awarded Membership and then Fellowship of the Royal College of Physicians of London, and later, Fellowship of the South African College of Neurologists. Bryan was a Specialist Neurologist at Groote Schuur Hospital where he was known by all as a wonderful, caring doctor, whose patient care included outreach into the community. Over the course of his career, his academic achievements were many, and included numerous scientific publications, involvement in important research endeavours and supervision to success of several postgraduate students in his field, leading to his ad hominem promotion to Associate Professor of Neurology at the University of Cape Town. He dedicated his life to the care of patients with neurological disorders and the training of generations of students and specialists in neurology at Groote Schuur Hospital. His clinical expertise and academic prowess was generously shared with special interest groups and the wider medical community of Cape Town, and extended way beyond the borders of the Western Cape. He made regular visits to hospitals in the Eastern Cape, distinguished himself as an Africa-wide expert in the management of patients with epilepsy. The Epilepsy SA Educational Trust was first known as the Mick Leary Education Trust and was established in January 1999. Prof Bryan Kies was one of the founding members that embraced the vision of the trust and together with his fellow trustees perused and assessed numerous applications form all over the country. The Trust sincerely appreciated the 12 years of voluntary time, skills and specialist knowledge in respect of epilepsy given by Prof Bryan Kies. His passionate support and interest in the students will be missed. He was a true advocate for people with epilepsy. Bryan passed away peacefully at St Lukes Hospice on Monday 18 July, after more than two years of a devastating illness, bravely borne. He will be remembered as a special son, brother, uncle and family member, as a dedicated doctor, teacher and leader, as a committed comrade and as a best friend. His incredible courage in the face of tremendous adversity will remain forever as the hallmark of this remarkable man, and will continue to be an inspiration to all whose path he crossed. We pay tribute to Prof Bryan Kies who, sadly, passed away in July 2011. His passionate support and interest in the students will be missed. He was a true advocate for people with epilepsy. Back to top Think Fest in Grahamstown – 1 July 2011 The branch was asked to assist National Office by doing epilepsy training at the Think Fest in Grahamstown.  We are very proud of our social worker, Ndileka Mandaba, who took the opportunity and for the first time, flew to Port Elizabeth and travelled to Grahamstown all on her own. The training was done at Rhodes University to an audience of about 18 people made up of Pharmacists, Occupational Therapists, Speech Therapists, and people working at the hospitals around the University. A few parents of people with epilepsy were also in attendance. The presentation which lasted for approximately 40 minutes, focused on: • Achievers with epilepsy, • What is epilepsy, • Causes Of epilepsy • Types of seizures, • Triggers, • Tests for epilepsy • Treatment, • Seizure management (do’s and don’ts), • Services rendered, • Where to go for help. The presentation was followed by a question and answer session which took about 20 minutes. The questions which were asked by the audience focused more on medical issues e.g. • One of the parents informed that their daughter’s speech has deteriorated after a seizure, and wanted to know what may have caused this • What about conventional treatment and the use of traditional medication? This was a great opportunity for the branch and feedback was given to National Office for follow up services. The professionals were very keen to partner with Epilepsy South Africa for service delivery in the area. Back to top Mandela Day 18 July 2011 Mandela Day is based on a simple concept: dedicate 67 minutes of your day in honour of Mandela who dedicated 67 years of his life fighting for social justice. Our Director took this opportunity and engaged the staff of Regional Office and the workers of Care Craft Lansdowne. In our dedicated 67 minutes, a presentation was done on Mandela Day, and an NGO, Food basket for Africa was asked to come and assist us with prepping and planting a veggie garden in the workers’ courtyard. Everyone participated quite enthusiastically with the preparing of the ground and the eventual planting of cabbage and spinach. The idea behind planting these vegetables is that it will be maintained by the workers and that the vegetables will eventually be sold by the worker committee as an income generation project for the workers. The activity, a first of its kind here at the Western Cape Branch was well received by all and as our Director quite aptly put it, “as much as we engage our clients  in the community in these type of activities, we should not forget that “charity begins at home”” Back to top Policy Paper on National Health Insurance The long-awaited policy paper on National Health Insurance (NHI) was published in the government gazette on Friday for public comment. The Green Paper as it is known spells out  the government’s approach to the transformation of South Africa’s healthcare financing system through the adoption of a National Health Insurance (NHI) model. The NHI model will ensure that all citizens of South Africa (and legal permanent residents) are provided with essential healthcare, regardless of their employment status and ability to make a direct monetary contribution to the NHI Fund. This will be achieved through the regulation of private sector healthcare pricing and the improvement in the quality of healthcare as well as the strengthening of the planning, information management, service provision and overhauling of management systems of the public healthcare system. What healthcare services will be funded by NHI? The NHI will offer access to a defined package of comprehensive health services based on a Primary Health Care (PHC) approach, with a strong focus on health promotion and preventative care. Quality curative and rehabilitative services appropriate to this level of care will also be rendered at a secondary, tertiary and quaternary level. The NHI service package will be delivered via a District Health System (DHS) according to three main streams, namely: District-based clinical specialist support teams; School-based PHC services and Municipal Ward-based PHC agents. In addition, PHC services will be delivered through accredited and contracted private practitioners practicing within a District. These providers will be reimbursed using a risk-adjusted capitation system linked to performance management. How much will the NHI cost and how will it be funded? The government intends implementing the NHI model gradually over a 14-year period and estimates the cost at R125 billion in 2012, increasing to R214 billion in 2020 and R255 billion in 2025 (figures expressed in real 2010 financial terms). The Green Paper makes the point that the estimated cost of NHI should be placed within the context of current total healthcare spend (including medical aid contributions estimated at R92 billion in 2010) estimated at R227 billion in 2010 or 8.5% of GDP. The Green Paper also assumes that the increased spending on NHI will be partially offset by the likely decline in spending on medical schemes (as all South Africans will be entitled to access NHI services). While the policy paper acknowledges that the NHI will require an increase in spending on healthcare from public resources that is faster than projected GDP increases, it makes the point that the ultimate estimated level of spending on NHI relative to GDP (of 6.2%) is less than current government spending and medical scheme contributions combined (of 8.5%). In terms of the funding for NHI, the Green Paper is vague in the detail. It emphasizes that funding will come from a combination of sources including the fiscus, employers and individuals and that the subject is a matter of continuing technical work with further clarity to be provided in the next six months. Who is required to join the NHI? Membership to the NHI will be mandatory for all South African citizens however the general public will be allowed to continue with voluntary medical scheme membership if they choose to do so. In other words, while participation in the NHI will be a matter of choice, the payment of a contribution to the NHI will be mandatory for all citizens and legal permanent residents who earn above a certain income. What is the role of medical schemes in the NHI system? Although lacking in specifics, an encouraging aspect of the NHI Green Paper is the provision made for the continued existence of medical schemes while acknowledging that the exact form of services offered by medical schemes may evolve into a fully-fledged NHI system. The existing expertise in the area of private healthcare administration and management of insurance funds is also seen as relevant to the development of adequate in-house capacity. How will the NHI be rolled out? In 2012 the first steps towards the implementation of the NHI will be rolled out through a process of piloting. Based on the results of a national audit of 53 healthcare facilities conducted by the Department of Health, 10 districts will be selected for the pilot phase. The funding for the pilot phase will be via a conditional grant from the Treasury.  Thereafter additional districts will be rolled out on an annual basis provided conditions for inclusion are compiled with. The first 5-years of the NHI will include the pilot studies as well as the strengthening of the public health system including the establishment of  an NHI Fund. The Fund will be established as a publicly administered government-owned entity reporting to the Minister of Health and Parliament. Although the Green Paper refers to a preferred single-payer entity model with the responsibility to pool funds (collected by SARS) to purchase health services from the contracted public and private healthcare providers, the policy paper  does concede that a multi-payer system may be explored as an alternative. Cosatu has publicly opposed a multi-payer system. The next steps The purpose of the Green Paper is to outlines the broad policy proposals for the implementation of the NHI which is published for public comment and engagement. After the 2-month consultation process ends, a White paper will be finalised and thereafter draft legislation will be developed and published for further public engagement, before the legislation is finalised and submitted to Parliament for consideration and approval. Alexander Forbes – Health Back to top JUBILEE PHOTO COMPETITION – INTERNATIONAL BUREAU FOR EPILEPSY (IBE) IBE announced the opening of the gallery of the Jubilee Photo Competition on 18 July 2011.  To view the photographs for both the Camera and Mobile Phone categories, please log on to http://www.ibe-epilepsy.org/jubilee/jubilee-photo-competition.   The photographs are grouped by date of receipt and numbered accordingly.  Each file includes information on the photographer and the individual photograph. The Competition winners will be announced during the 29th International Epilepsy Congress in Rome at the end of August where an exhibition of the 50 best photographs will be staged. IBE expressed its appreciation to everyone who contributed to and assisted in promoting this initiative. Back to top We Connect Now Dear Southern African Association For Learning and Educational Differences, I am a college student with a learning disability who is enrolled at Louisiana State University. I received a grant from YP4 in 2008 to develop a website to serve college students with disabilities in an effort to connect and integrate them more as a virtual community with a voice on important issues. I would like to share the link of the We Connect Now website with you so that you may share it with the students that you have contact with. The website can be accessed at http://weconnectnow.wordpress.com/ The website has been used as a resource by institutions of higher learning and has been linked by colleges and universities and groups serving people with disabilities in 50 states and at least 5 foreign countries. I thank you for any and all help that you and your office may give me in promoting this project as a service to all college students with disabilities. Sincerely, Gabriela McCall Delgado Back to top Parysenaar vereer vir gemeenskapsbetrokkenheid ‘n Parysenaar het vanjaar die eer te beurt geval om uit die hele Gauteng/Vaaldriehoek/ Fezile Dabi streek aangewys te word as die Lura-gemeenskapsbouer van die Jaar. Gary Westwood, direkteur van Epilepsie Suid-Afrika se Vrystaat en Noordwes-tak het tydens die algemene jaarvergadering van die gemeenskapskas die spog toekenning van mnr. Ian Kennon, president  van Lusa, ontvang. Die toekenning word jaarliks oorhandig aan die persoon wat merkwaardige en onbaatsugtige  werk in die gemeenskap doen. Gary is n man wat glo in betrokkenheid by die gemeenskap. Vir hom is sy werk nie beperk tot sy werksaamhede by Epilepsie Suid-Afrika nie, maar maak hy seker dat hy help waar ookal daar hulp nodig is om ‘n verskil in mense se lewens te maak. So het hy gehelp om 25 groentetuine in die groter Parys te vestig, ‘n HIV/Vigs-program in onder meer Tumahole en Mokwallo van die grond as gekry, ‘n ondersteuningsgroep vir epilepsielyers in die Noordwes-provinsie gestig en selfs toegesien dat mediese hulptoerusting beskikbaar gestel en gemonitor word vir bruikhuur in die Noordwes-provinsie. Met sy hulp is meer as R2,4 miljoen se geldelike hulp aan verskeie groepe bewillig waaronder ‘n teatergroep. Dan is hy ook nog by die Gemeenskap Polisiering Forum (GPF) in Parys betrokke waar hy waardevolle werk doen. Back to top Epilepsy Facts Corner Fetal Effects of Anticonvulsant Polytherapies: Different Risks from Different Drug Combinations In the online version of Archives Neurology, June 13, 2011, Doctors Holmes and colleagues from the Massachusetts General Hospital for Children and the Harvard School of Public Health, the Departments of Obstetrics and Gynecology and Pediatrics, Loyola University Health System, present results from an analysis of the North American Antiepileptic Drug Pregnancy Registry between February 1, 1997 and June 1, 2010. Information on antiepileptic drug use and demographic characteristics was collected in three telephone interviews across the United States and Canada. Six thousand eight hundred fifty-seven (6857) pregnant women taking an antiepileptic drug for any reason were included in the analyses. The investigators found that the risks of malformations was 1.9% amongst infants exposed to lamotrigine as the sole medication; however, it rose to 9.1% when lamotrigine was combined with valproic acid; 2.9% when lamotrigine was added to any other antiepileptic drug. The risk of malformations was 2.9% for infants exposed to carbamazepine as sole therapy, as opposed to 15.4% for carbamazepine with valproic acid, or 2.5% for carbamazepine with any other antiepileptic drug. The investigators concluded that the risks of malformations among infants exposed to lamotrigine and carbamazepine in combination was higher than whether these individuals took each of these medications as the sole finding. This study is important because it is one of the few to address the issue of combination therapy and risks to unborn children, as opposed to single therapy, which is the way most pregnancy registries are reported. This study underscores the point that has been made by previous studies showing the risks associated with valproic acid use. It also shows that combination therapy also increases one’s risk for potential problems to occur. This is another important finding in our understanding of what are the risks to women with epilepsy who become pregnant while taking medication. Who is at Risk for SUDEP? In the June 2011 issue of the journal Epilepsia, Drs. Hesdorffer and colleagues from a number of institutions from both the United States and Europe present an analysis of four case-controlled studies from the United States, Sweden, Scotland and England to define particular risk factors of individuals who may be at risk for SUDEP (Sudden Unexpected Death in Epilepsy). Early onset refractory symptomatic epilepsy with frequent generalized tonic-clonic seizures and needing to take more than one anti-epileptic drug appear to be important predictors. The results also suggest that reduction in the number of generalized tonic-clonic seizures is a priority and of more importance than reducing the number of anti-epileptic drugs as an individual risk factor. This research is an important study because it helps to further our knowledge of identifying individuals early on in their condition who may be at risk for sudden death from seizures. Further work needs to be done in order to understand these risk factors fully and also to develop strategies on how to prevent SUDEP from occurring.