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Following the close of the election nomination period, we would like to introduce the incoming Vice President North American Region, Deirdre Floyd. Deirdre will complete the current term of IBE Regional Vice Presidents, which will come to a close at the time of the IBE General Assembly in 2023. I was diagnosed with epilepsy when I was 14 years old and for many years my seizures were relatively controlled. I worked at many different jobs although my true background is in the arts as a production assistant and make-up artist. Over 35 years ago my seizures changed significantly and I had to stop working. My epilepsy specialist suggested I contact the Epilepsy Association of the Maritimes to do volunteer work. Since then, I’ve held many different positions including Fundraising Chair, Vice Chair, and President of the local agency. I have done a significant amount of advocacy work at the local and national levels, including chairing the Purple Day for Epilepsy Campaign that was founded by Cassidy Megan in Nova Scotia, and serving as President of the Canadian Epilepsy Alliance. Until recently I served on the board of the Canadian League Against Epilepsy representing the Canadian Epilepsy Alliance (CEA). Currently I serve [...]

Join us on Sunday, 13th June, for the IBE Epilepsy & Society Symposium as part of the 13th AOEC congress programme! The all-day programme is a great opportunity for people with #epilepsy and their care providers to take part in a day of interactive discussion with speakers. While there will be some focus on the situation for people with epilepsy living in the South East Asian and Western Pacific regions, there will be plenty to interest everyone! Time: 09:00 - 17:30 Japan Standard Time Topics include: Epilepsy & Covid-19 Driving with Epilepsy Golden Light Awards with personal testimonials Review of the Special Art Exhibition REGISTRATION NOW OPEN! http://www.epilepsycongress.org/aoec/registration/   Delegate Registration Fees (for Symposium only): High Income Countries: US$30 up to 14th May, US$45 from 15th May Upper Middle Income Countries: US$20 to 14th May, US$30 from 15th May Lower and Middle Income Countries: US$15 to 14th May, US$20 from 15th May Links: Register for the symposium here Find out if you qualify for reduced registration here For any questions on registration, please email [email protected] For any general queries on the symposium, please email [email protected] All presentations and discussion will be in English. Organised by the IBE Regional Executive Committees Western [...]

A Golden Opportunity to recognise and award a young person affected by epilepsy in your Chapter Is there a young member of your association who is affected by epilepsy or cares for someone with epilepsy, who has been a “shining light” for others and is deserving of recognition? We are calling on IBE chapters to submit nominations for the International Golden Light Award, to be presented during the 34th International Epilepsy Congress 2021. BACKGROUND The award recognises the contributions of people affected by epilepsy in their community and were first presented in 2004, with the original title ‘Outstanding Person with Epilepsy Award’. The title of the award was changed to Golden Light Awards in 2016, to recognise the fact that people with epilepsy should not be defined by their condition, thereby embracing the call of the International Bureau for Epilepsy to ‘bring epilepsy out of the shadows and into the light’. The awards are now presented at all regional and international epilepsy congresses. CANDIDATES To be considered for an award, candidates must be between 18 and 35 years of age on 1st January 2021. Proof of age may be requested. The candidate must be nominated by the IBE chapter in which [...]

Announcing an Art Exhibition taking place at the 13th Asian & Oceanian Epilepsy Congress An invitation is being extended to submit artwork to be exhibited at the time of the 13th Asian & Oceanian Epilepsy Congress in June. Below you will find details of the exhibition and guidelines for submitting artwork. Submissions are invited from all regions of the world and in a variety of art forms including painting, needlework and sculpture. The deadline for submissions is 21st May. Anyone, of any age, can take part, including people with epilepsy and their carers, doctors, nurses, social workers, etc. Entries will be exhibited on the Art Exhibition Gallery as part of the virtual 13 AOEC with three artworks selected to feature at the IBE Epilepsy & Society Symposium taking place virtually on Sunday, 13 June 2021. SUBMISSION RULES: Any of the following art media are acceptable for the exhibition: Painting or drawing Photomontage Pottery Sculpture Beadwork, embroidery or needlework A contestant may submit up to a maximum of 3 pieces of art. Submission can be made using a scan or photo of the artwork. Scans or photos should be between 1MB - 3MB file size or should be spread over multiple emails.The [...]

Vaccines against COVID19 are currently being approved and becoming available. There is currently no evidence to suggest that having epilepsy is specifically associated with a higher risk of side effects from a COVID-19 vaccine. For people with epilepsy, the risk of COVID-19 infection and potential complications far outweighs the risk of side effects from a COVID-19 vaccine. As with other vaccines however, a fever can develop after a COVID-19 vaccination. This could lower the seizure threshold in some people. Antipyretics (e.g. paracetamol/acetaminophen) taken regularly for 48 hours after the vaccination (or for the duration of fever) will minimize this risk. Before you receive a COVID-19 vaccine, make sure to let your vaccination provider know that you have epilepsy, as well as any other important medical information, such as: Allergies, especially an allergy to any ingredient in the vaccine Allergic reactions to prior vaccines (e.g. flu vaccine) Current or recent fever or infection All medications you are taking, especially medications that suppress the immune system (e.g. immunomodulatory or immunosuppressive medicines) or anticoagulants. If you are pregnant or nursing, or plan to become pregnant As with any vaccine, you should not receive the COVID-19 vaccine if you are allergic to any of its [...]

We need your help! IBE is conducting a survey in Europe to understand how well informed women of childbearing age are on the risks involved in epilepsy and pregnancy and how well this information is understood. The survey is currently available in English, German, Georgian, Russian and Spanish. Why? We need to establish current demographics and the shortfall in knowledge in this very important area for both the mother and her unborn child. The survey is the first part of a Europe-focused project on Epilepsy & Pregnancy, the results of which will inform on design and delivery of future interventions through the development of a multi-faceted toolkit. If Phase One is successful, the programme will be rolled out in other regions. What next? The result of the survey will inform us of the following: The experiences of women with epilepsy of child bearing age What are the areas in which the IBE needs to intervene What our intervention programme should look like. What you can do? If you are living in Europe and willing to participate in the survey, it will take no more than 8 minutes to complete. The survey is completely anonymous, and we will not be able to [...]

To achieve our 50 Million Steps for Epilepsy challenge doesn’t require that you climb a mountain. Yet, that is exactly what Fred Beuchi and his team are doing right now as a prequel to the official start of the 50 Million Steps challenge on 4th January. With a sister who has epilepsy, Fred’s aim is to raise awareness about the condition not only in Kenya but across the African region. Fred, who lives in Kilifi in Kenya and is a founder member of the Foundation for People with Epilepsy, a Provisional Chapter of IBE, set out last week from Nairobi with his team to cycle to Arusha, Tanzania, at the base of Mount Kilimanjaro and to then climb to the top. When they reach the summit, they will plant a flag that carries the message that 'epilepsy is manageable'. Already the cycle to Arusha has been completed and the team is now on Day 3 of the climb to the summit. Fred is tracking the steps he is taking on the climb using graphs from a health app. On Day 1 of the climb from the base of the mountain, Fred walked almost 7,000 steps. Not a lot, you might think [...]

New campaign launched by the IBE ahead of International Epilepsy Day 2021 50 million people worldwide are affected by epilepsy according to WHO/OMS official figures. There are many different causes for epilepsy including genetic disposition, head trauma or brain tumour. For some, the cause is unknown. Epilepsy affects almost every aspect in the life of the person diagnosed with the disease. For many people living with epilepsy, the stigma attached to the disease is more difficult to deal with than the disease itself. To raise awareness and to raise vital funds for epilepsy organisations across the world, the International Bureau for Epilepsy (IBE) is asking people to join together to walk 50 million steps in the lead up to International Epilepsy Day – one for each person in the world who has epilepsy – as part of the ‘50 Million Steps for Epilepsy’ challenge. “The 50 Million Steps for Epilepsy campaign is an opportunity for people around the world to raise awareness of the impact of epilepsy and raise vital funds for the organisations that support them. We’ll need at least 500 people to walk 20,000 steps each week during the campaign if we’re to be successful, so we hope everyone [...]