Epilepsy Africa News

WHO THIS TOOLKIT IS FOR AND HOW TO USE IT This toolkit is for organisations looking for guidance, ideas, or inspiration as they develop advocacy projects around epilepsy. Generally, the toolkit is aimed at civil society organisations working across Africa and has been heavily influenced by the needs and experiences of such organisations. The various modules and topics addressed in this toolkit can be used both as a step-by-step guide to lead you through a brand new advocacy planning process, or as a reference or set of stand-alone resources that can be used when encountering a problem or opportunity in the context of existing epilepsy advocacy work. It is meant to be versatile and useful to a variety of audiences. Download the Toolkit here   HOW THE TOOLKIT WAS DEVELOPED This toolkit was developed with input from key stakeholders, including persons with epilepsy and their families, IBE chapters across Africa and headquarters representatives, and input from others with a connection to epilepsy either personally or through an organisation. Through an initial needs assessment, stakeholders provided their perspectives on resources that were currently available to them, best practices they wanted to share, areas where they were seeking support, and opportunities for additional [...]

Chairperson & Editor’s message Dear Reader, Welcome to the 25th edition of Epilepsy Africa News. Epilepsy Africa News is a platform whereby persons with epilepsy, Epilepsy Organisations and Individuals are sharing their views on issues on epilepsy. This edition is covering news for the Month of August, 2020. In this article we remember an epilepsy icon, Anthony Mulenga Zimba, through an obituary of his work in Zambia. Last month we produced a special dedication edition to his work in Africa. As we continue to remember him and mourn his departure we look ahead with hope to the continued building of his legacy. Investing in economic empowerment of persons with epilepsy has proven to a path to reduce poverty. We think empowering persons with epilepsy to rise out of poverty is essential for the sustainable development of any country. Mauritius has developed a sustainable partnership worth replicating with 'Foodwise', another Non-Governmental Organisation to ensure that the needs of persons with epilepsy are covered during the COVID-19 period and beyond. All organisations of persons with epilepsy have a leaf to borrow from the article covered in this issue. In the Democratic Republic of Congo we profile the work of Aslek - an organisation [...]

Chairperson & Editor’s message Dear Reader, It is with excitement that we engage you in this trying time of COVID19 challenges where our work has been slowed down by the pandemic that has hit all African Countries. It is with sadness that we inform you that some of our chapters in Rwanda and Democratic Republic of Congo have been hit hard with some reported deaths of persons with epilepsy in these countries. In this edition we share with you some of the exciting work that our chapters have been carrying out in Rwanda, Uganda and Eswatini, despite the challenges we are facing. In addition we share with you a report on the quarterly meeting we had with our chapters and the plans that lie ahead of us in the coming months. As a region we are also excited to report on the commencement of two projects that are supported by Band Foundation- namely the Promising Strategies Grant (PSG) and Making Epilepsy A Health Priority in Africa (MEHPRI) programs. The PSG program started earnestly in April 2020 with five Chapters having been awarded to carry out innovative projects that range from inclusive education and capacity building through to use of technology, to [...]

Chairperson & Editor’s message A gloomy state of affairs emerged during the period with the advent of the Corona Virus in our Region. The world was affected in all aspects of life, business coming to a near standstill and virtual communication realized. The situation has affected the flow of information as little or no activity is being done. This article therefore will highlight messages on the COVID-19 other than what was announced in the last issue of the Newsletter. Aware of the effects of anxiety on our members a special letter has been written by AREC for you... Download the Newsletter

Chairperson & Editor’s message We are excited with developments that took place during this period. We had over 15 Chapters celebrate the Epilepsy Day across Africa. Chapters showed their capability in engaging and partnering policymakers, civil society organization and like-minded organization in spreading the message of friendship and inclusion. The message was spread in churches, schools, community gatherings and hospitals across the continent to show the diversity of where epilepsy gospel can be spread. Social media, radios, television. We say BRAVO!!!!! to all persons with epilepsy, self-advocates and other stakeholders that devoted time on this special day to advocate for inclusion. In this article we will share with you some of the experiences of this years’ Epilepsy Day. We are also excited to inform you about the outcome of the World Health Organization Executive Board meeting that took place in Geneva, Switzerland in January, 2020. The Epilepsy Agenda item that mainly focused on states to create National Epilepsy Plans was supported by all 47 WHO Afro countries with Gabon taking the responsibility to present a paper indicating the Regional Support. Zambia and Swaziland are co-sponsoring the resolution together with Russia and China and other four countries spread across different continents. As [...]

Chairperson & Editor’s message It is with excitement that we are closing this year 2019. AREC is excited with new and potential that this region will working on in 2020. As was promised in the last edition of our newsletter we indicated that we will be having a pilot situational analysis in Rwanda and Eswatini and we are excited to inform all that the data collection was completed. We want to than the chapters that were involved. We are hoping to replicate this with other chapters soon. A team from AREC was privileged to travel to Eswatini to meet with the Chapter as well as work on the upcoming African Epilepsy Fund. We are excited to inform you that we are now on the verge of full registration with the identification of the Board and Patron including an AU Ambassador who is Past President of one of the African counties already identified. We are excited to inform you that the Kingdom of Eswatini has offered to host the Trust Fund with full government support. The full report is contained in this newsletter. Our newsletter will contain feedback that has been received from members on the establishment of the Trust whose sole [...]

Chairperson & Editor’s message Welcome to this 20th edition of Epilepsy Africa and a very warm greeting from all over our beautiful continent. It is with joy that we share highlights of Epilepsy work happening in Africa that our affiliates have been doing across the continent. There is a key emerging issue that researchers and other stakeholders have written and talked about. It is about alternative healing which would include faith and traditional healing. What can be done to involve and collaborate with those that practice such healing? In this edition, we feature an article on how religious belief affects epilepsy treatment. Six months ago we celebrated the birth of two affiliates in Rwanda and Lesotho. In these two countries, there has been a lot that has been happening and we have special coverage of their work in the past two months. Lesotho introduces us to our new “verandah” corner “Know Your Chapter”. In an effort to knowing each other and the work we are engaged in, we will be covering a continental leader who is leading or involved in Epilepsy work. This will not only feature those from our chapters but will include even ordinary citizens who are contributing to [...]

Chairperson & Editor’s message Welcome to this edition of Epilepsy Africa and very warm greetings to all readers of this important issue highlighting some of the features of the 4th African Epilepsy Congress held in Entebbe, Uganda from 22nd to 24th August, 2019. The Congress hosted over 200 delegates and was considered to be interactive as more social issues were presented. We wish to sincerely thank the Scientific and Organizing Committee for their tireless effort to ensure a successful programme for the Congress. The Committee comprised of (from left to right in picture) Prof. Agallo Diop, Ms. Mary Secco, Dr. Jacob Mugumbate, Dr. Angelina Kakooza-Mwesige, Ms.HelenCrossand, Ms.Sarah Nekesa, a combined team of members from ILAE and IBE. We would want to appreciate the contributions by all speakers and the effort done to ensure informative sessions and the support that was provided by the host IBE and ILAE Chapters. It was a unique conference where medical research was challenged with social issues that cannot be addressed solely with medical treatments or knowledge of numbers. This will form basis of future social oriented research for Africa. We look forward to a successful Fifth Session of an African Epilepsy Congress in 2021, subject to [...]

Chairperson & Editor’s message Welcome to this edition of Epilepsy Africa and very warm greetings to all new readers since our last new regional newsletter went out. It is with excitement that Africa welcomes two new members (Rwanda and Lesotho) to its International Bureau of Epilepsy family. Since the completion of tenure of office for our past President Dr. Jacob Mugumbate, it is with all humbleness that I join a capable team of Epilepsy leaders on the continent as the new Vice President for Africa. The year is already going by very quickly and our organization is active on many fronts in Africa. It is with joy that engagement with Africa Union was resumed and engagements by our Mauritian Chapter has seen epilepsy being recognized by the African Union as a disability. This, therefore, will enhance our effort of fighting stigma and discrimination together with others disabilities. Africa was well represented in the General Assembly that took place in Bangkok. Significant issues for persons with epilepsy such as poverty, access to medication, employment and health were covered in the discussion that took place. We continue to advocate for change and have made efforts to engage promptly and effectively within six (6) [...]