Notice to all IBE Chapters with Voting Rights

Election of the President of the International Executive Committee for the term 2021-2025 The ballot for this election will take place by post/email between 16th October and 30th November 2020. In advance of balloting, IBE chapters with voting rights are hereby invited to nominate a candidate to serve in the position of IBE President. If you wish to nominate a candidate to stand for election to this position, please complete the nomination form. All nominations must be received at the IBE Office no later than midnight (CET) on Sunday 4th October 2020. Nominations should be sent to the following address: Email: [email protected] or Mail: International Bureau for Epilepsy, Office 208, Nesta Business Centre, 4-5 Burton Hall Road, Sandyford, Dublin D18 A094, Ireland Guidance notes and procedural documents on the nomination and election of candidates are available below for your further information. You will also find below the role description for the position of President. Please note that the election of the Secretary General and Treasurer for the term 2021-2025 will begin in early December when nomination papers will be circulated. The term of the regional Vice Presidents, which began in 2019, will not finish until 2023. We would urge all Chapters [...]

2020-09-01T18:59:56+00:00September 4th, 2020|

IBE Global Teams – An invitation to find out more!

IBE Topic Focused Global Teams – an Introduction IBE’s Strategic Plan recognises the importance of engaging people with epilepsy and their care providers in all our decision making. Involving these stakeholders in all our activities is vital if they are to become the motivators of tomorrow. The objective is to see an expanded IBE board emerge over the next decade whose membership consists of people with a wide range of knowledge, experience, expertise and skills. As a first step, a new series of working ‘Teams’ is being created, each one focusing on a specific issue related to epilepsy and we would like you to consider membership. - A Global Academy Team will work on an important new initiative to train people with epilepsy to become international advocates and spokespersons. They will need to develop the necessary knowledge to be confident in interacting with public institutions, the scientific community and industry. Members of the Team will provide: input of people affected by epilepsy on module content; support with translation as necessary; promotion of the academy at local, national and international levels. - A Global Action Team will work on encouraging the implementation of the World Health Assembly Resolution on Epilepsy at national [...]

2020-08-26T10:11:12+00:00August 26th, 2020|

Anthony Mulenga Zimba, RIP

It is with great sadness that IBE announces the death of its esteemed Treasurer, Anthony Mulenga Zimba. A victim of Covid-19, Anthony passed away in hospital in Lusaka, Zambia, on the morning of Sunday 9th August. Anthony had a long history of service to IBE, having served on the African Regional Committee from 2005 to 2009 and on its International Executive Committee for the last 11 years, firstly as Vice President for the African Region from 2009 to 2017 and as Treasurer from 2017 until his passing. During this time, he worked tirelessly on behalf of people with epilepsy and those who care for them. His particular focus was on his beloved Africa and, as a result of his efforts, many IBE chapters in the region were supported through the IBE Promising Strategies Program in a range of projects aimed at improving their quality of life through training, advocacy and employment opportunities. He was also a member of the organising committee of the African Regional Epilepsy Congresses that took place in Nairobi, Cape Town, Dakar and Entebbe. Anthony was the founder of the Epilepsy Association of Zambia in 2001, which became a chapter of IBE soon thereafter. To improve his knowledge [...]

2020-08-10T09:02:32+00:00August 10th, 2020|

Shenaz shares her story of epilepsy and Covid in India

This article has been shared by Shenaz Haveliwala, a person living with epilepsy in India.   The COVID-19 outbreak has been a global scare. But, for me, coronavirus became serious only when the lockdown was announced. This mainly meant that I had to have my medicines in stock. I had stocked two months of medicine, but then the lockdown kept extending, so I got really anxious. What if pharmaceutical companies shut down? I have Tablet Briviact in my prescription which is not manufactured in India, so I was really scared if logistics are hampered, things will be really difficult for me. The uncertainty was terrible. Unfortunately, my seizures had become more frequent. My doctor's prescription was going to expire in two months, these things were always on my parents' and my mind. The government was very supportive, especially when it came to healthcare. We had medicines delivered to our homes, with online payment and medicine parcel left with the security, to avoid any human contact.  There were doctors and nurses working two-three times more time than their scheduled duty. That was assurance that even if I hurt myself during a seizure, there would be medical help. I have a start-up, operating from [...]

2020-07-30T12:46:35+00:00July 30th, 2020|

Epilepsy Care beyond Covid-19 – a story from Kenya

This article has been shared by Fredrick Beuchi, an epilepsy awareness activist and caregiver in Kenya.   My sister wondered why I had taken so long to visit them at home. Now that she knows how to operate a cell phone she would call to ask if am ok. It was mid-March, 2020 I had traveled to Nairobi city from the coastal town of Mombasa where I live with my family. I was preparing to host an event lighting up the tallest building in Kenya called The UAP-Old Mutual Tower in purple, to mark Epilepsy Purple Day, which happens on 26th March every year. Fredrick Beuchi I was so excited about the event, it had received massive support and good will from the city government and media across the country being the first one of its kind. Three days to the event Kenya announced its first case of Covid-19 through a live TV coverage by the Minister of Health. The announcement came with an equal share of fear and panic to the people, it wasn’t long before all public events and gatherings were cancelled with immediate effect. As it downed in me that the Purple Day event was also [...]

2020-07-27T10:31:45+00:00July 27th, 2020|

Anita Mago’s Covid-19 Story

My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. It all started like something unreal when I first heard about Covid-19. It was so far away in China and it had killed a lot of people. As we monitored the news, Covid had spread to other parts of the globe and countries had started to lockdown their social lives. My first thoughts and worry were about for my daughter. Not that she was in any of the countries where cases had been reported: she was here in Uganda with me; but she has epilepsy. My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. My daughter was equally worried and this raised her anxiety. Those who are caregivers like me will appreciate what I was going through and for those who have never experienced a near to no supply of life long medication, it would be hard for me to explain. Every single medication was tripled in price and this was very frustrating. I walked from pharmacy to pharmacy and could not [...]

2020-07-21T20:16:27+00:00July 21st, 2020|

Vinod Saxena, RIP

It was with great sadness that IBE learned earlier today of the sad passing of Dr Vinod Saxena. From India, Vinod served as IBE Vice President Western Pacific Region from 2009 to 2013 and was a member of the IBE Regional Committee Western Pacific for several years. As a member of the board, he was held in high esteem for his insightful contributions, delivered always with courtesy, diplomacy and, usually, a little wit. His love of life was infectious and his kindness to others did not go unnoticed. He was dedicated to supporting people with epilepsy to achieve the best possible quality of life and for his exemplary work he received the Ambassador for Epilepsy award in 1991. It was fitting that the award was bestowed during the 18th International Epilepsy Congress, which was held in his home city of New Delhi. IBE would like to extend its sincere sympathy to his family with the hope that memories of happier times will help them through the difficult days that lie ahead. May he rest in peace.

2020-07-21T14:18:30+00:00July 21st, 2020|

‘Making Epilepsy a Health Priority in Africa’ – Utetezi Project Phase 2

BACKGROUND The Utetezi Pilot Project, funded by the BAND Foundation in 2019, provided funding to five African countries to develop the groundwork to create national epilepsy task forces, the development and implementation of national epilepsy plans, and the introduction of educational initiatives to address the recommendations of WHO Resolution WHA68.20. The evaluation of the pilot project has provided direction and opportunities which will be harnessed in phase 2, where we will establish a communication plan, website and tool kit to share best practices. Phase 2 offers a small grants program to enable IBE chapters to develop plans at the national level and to work together to develop and disseminate a regional plan of action. This project is grounded in the core rallying principle of the 2030 Agenda for Sustainable Development – leaving no one behind. During its implementation, and in alignment with the commitment to sustainable development goals of regional governments, effort will be made to identify regional stakeholders to support the project cause. There will be the opportunity also to increase efficiencies and value for money through harmonized operations with the Promising Strategies Program, which are also supported by the BAND Foundation. In addition, the project seeks to complement the [...]

2020-08-04T13:17:40+00:00July 16th, 2020|

Share your COVID-19 story

Dear Friends, It is now more than six months since the world began to hear about COVID-19 and four months since the first country in Europe, Italy, announced lockdown in its bid to fight the virus. Less than three weeks later, our countries – Scotland and Ireland - entered lockdown. Since then, the pandemic has quickly spread westwards and now, as Europe begins to come back to normal, the Americas are still seeing huge numbers of new cases daily, accompanied tragically, by a high numbers of deaths. The world we are now emerging into will be vastly different to how it was before we were marooned in our homes. Many of us still have to view our friends as potential enemies, keeping them at distance with no room for affection. We may have to don face masks whenever we leave our homes and search for hand sanitizers wherever we go. If, how and when, the world will return to anything like the old normal are questions that cannot be answered at present. However, we can now spend some time reflecting on how we coped with the arrival of COVID-19, how it affected our lives, and how it has made us see [...]

2020-07-16T15:41:30+00:00July 16th, 2020|
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