Let’s shine a light for epilepsy!

International Epilepsy Day 2021 will take place on Monday, February 8. This is a powerful opportunity to highlight the problems faced by people affected by epilepsy, their families and carers, in every region of the world. A highlight of International Epilepsy Day 2020 was seeing a number of landmarks and buildings around the world turn purple to mark the day! The Lega Italiana Contro de l’Epilessia (LICE) coordinated events in Italy that included having the Colosseum in Rome and a fountain in Trieste light up in purple to raise awareness. Tower 42, the fifth tallest skyscraper in London, projected the International Epilepsy Day logo from the top of the building as well as raising awareness among everyone inside the building through electronic posters and signage in lifts. Colosseum, Rome, International Epilepsy Day 2020 Tower 42, London, displaying the International Epilepsy Day logo in 2020 We hope to see more landmarks lit up to mark International Epilepsy Day in 2021! We're asking you to encourage landmarks in your town or country to light up purple - let's shine a light on epilepsy! Please let us know if a landmark in your area will be participating, and contact us [...]

2020-10-16T11:41:53+00:00October 16th, 2020|

IBE Africa Region – Webinar invitation

Making Epilepsy a Health Priority in Africa - WHA Resolutions 68:20 Youths with Epilepsy across Africa Speak Out! Join us for our monthly Webinar series! Date: 20th October, 2020 Time: 2:00pm Nairobi time - 1:00pm Pretoria time Moderator: Action Amos, Vice President Africa, International Bureau for Epilepsy To register and receive a webinar link please email [email protected]   Panel Discussion (30 mins): Why the Global Epilepsy Plan matters for Youths with Epilepsy in Africa? Moderator: Comfort Mussa, Cameroon, IBE Epilepsy Journalise Award Winner 2014 Panelists: • Gresham Africa, WHA Program Coordinator, Epilepsy South Africa • Shakira Nasuuna, Board Member, Epilepsy Support Association, Uganda (ESAU) • Sharon Mbugua, Kenya Association for the Welfare of People with Epilepsy (KAWE) Petition (20 mins): Youths with Epilepsy Petition to 24 Ministers of Health and Parliamentary Health Committees in Africa to support the World Health Assembly (WHA) Resolution 68:20 Speakers: • Chantelle Kanyabutembo, Rwanda - Swahili/French • Bessong Takang Eyong Obasi Praise, Cameronn - English • Felix Joao, Mozambique - Portugese

2020-10-14T09:37:41+00:00October 13th, 2020|

Anthony Mulenga Zimba – Book of Condolence

It is with great sadness that IBE learned of the death of its esteemed Treasurer, Anthony Mulenga Zimba. 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 then 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 and skills in the epilepsy and allied fields, he undertook a number of professional courses including the [...]

2020-09-08T09:53:35+00:00September 11th, 2020|

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|
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