Women and Epilepsy – A new website from IBE

Having a baby is an exciting time, full of wonderment, anticipation and joy. But for women with epilepsy, becoming pregnant and having a baby is a little more complicated. For this reason, the International Bureau for Epilepsy (IBE) has developed a new website - womenandepilepsy.org - as part of a wider project on this topic.A campaign informed by real-world needsTo help us identify which information women with epilepsy want and where there are information gaps, we surveyed almost 900 women across Europe. Their personal insights have been vital in developing the website to empower women with epilepsy to talk with their medical care providers and get the medical support and advice they need.Women have to contend with additional issues, but information is power, so we're providing all the information a women with epilepsy will need to know about pregnancy, hormones, sex and more.We hope to expand this critical campaign to other global regions of the world.Visit the WomenAndEpilepsy.org website here.Working group members:Professor Gus Baker (Chair), Mrs Ann Little (Co-chair), Mrs Tea Bobinac-Krivacic, Prof Martin Brodie, Mrs Elizabeth Cunningham, Ms Erin Davies, Prof Joanna Jedrzejczak, Mrs Barbora Jones, Dr Lieven Lagae, Ms Lorraine Lally, Prof Janet Mifsud, Dr Barbara Mostacci, Dr Natela [...]

2022-01-18T14:40:09+00:00January 18th, 2022|

International Epilepsy News – Issue 4, 2021

After 25 years working at IBE and 15 years as Editor of IE News, this is a sad moment for me as I pen this, my final message to you as IBE Executive Director and IE News Editor. All good things must come to an end and on 31st December I will retire. This last editor’s message is, therefore, the opportunity for me to say Thank You to all the wonderful people I have met through my time working for IBE. Although, as the saying goes, if you enjoy what you are doing, you will never work a day in your life! Working for IBE has provided an open window through which to witness the struggles, efforts and undaunted bravery and commitment shown by people right across the world as they work to improve the lives of people with epilepsy - whether as a parent, sibling, healthcare provider, or chapter employee. In traveling to regional and international congresses and on the invitation of chapters, I have also been privileged to meet countless people with epilepsy who never allow their diagnosis to hinder them from striving to achieve their dreams; they are truly inspiring and I will never forget them. Finally, I [...]

2022-01-26T14:16:48+00:00December 26th, 2021|

Introducing Donna Walsh, Incoming IBE Chief Executive Officer (CEO)

Dear Friends, I am pleased to announce that IBE has appointed Donna Walsh as Incoming IBE CEO who will take over from our Executive Director, Ann Little, who is retiring on 31st December 2021. Donna joins IBE from the European Federation of Neurological Associations (EFNA), where she has worked as Executive Director since 2012. At EFNA, Donna was responsible for overseeing the development of its new strategic direction, and also led in the creation and implementation of its annual workplan, projects and activities. This included keynote initiatives such as the OneNeurology Partnership, the MEP Interest Group on Brain, Mind and Pain and the Training Initiatives for Neurology Advocates. Donna has also been active in representing EFNA and the neurology patient community externally, including as a member of the European Affairs Sub-Committee at the European Academy of Neurology, a Board Member of the European Brain Council and a member of the WHO’s NeuroCovid Global Forum. She is also regularly invited, as a patient leader, to join initiatives of the pharmaceutical industry – such as the Lundbeck Institute Neuroscience Faculty, the Roche Personalised Healthcare Council and the Steering Committee of the EFPIA Patient Think-Tank. Donna has also moderated and chaired many events for [...]

2021-10-20T10:36:16+00:00October 20th, 2021|

A farewell message from Ann Little, IBE Executive Director

It is with a mixture of gratitude and sadness that we announce the departure of our Executive Director, Ann Little.  Ann will step down from her role at IBE on December 31st, following 25 years of service. Over those 25 years Ann has been central to IBE's activities and instrumental to the organisation's growth. Her contribution has been immeasurable and she leaves a lasting legacy. We hope you will join us in extending our thanks to Ann and in wishing her every happiness in her upcoming retirement.   It’s difficult to believe that I am in my 25th year at IBE, having joined in 1997. We all know the saying that ‘if you enjoy what you are doing, you will never work a day in your life’. And this is true for my time at IBE, which now draws to a close as I begin my retirement. Over the course of those 25 years, I have been honoured to work with five boards, led by dedicated Presidents, whose efforts have seen the introduction of a wide range of initiatives, each one developed to address IBE’s mission to improve the quality of life of people with epilepsy and their care providers. As [...]

2021-10-20T10:34:32+00:00October 20th, 2021|

President to President – Conversation with IBE Presidents Martin Brodie and Francesca Sofia

IBE Presidents past and present discuss their work and goals In July 2021, IBE's Past President Martin Brodie and President Francesca Sofia, took part in an interview with the ILAE. Watch the complete interview video above to hear what led Martin and Francesca to their roles, discussion of their achievements, hopes for the future of epilepsy advocacy and views on collaboration between IBE and the ILAE. Alternatively you can visit the 'President to President' playlist on our YouTube Channel to watch individual segments from the interview.  

2021-10-06T15:02:18+00:00October 6th, 2021|

IBE Day at the 34th International Epilepsy Congress

If you missed IBE Day at the 34th International Epilepsy Congress on Septmeber 1st don't worry- you can catch up with each of the day's sessions below! Making Epilepsy a National Health Priority – intersectoral collaboration Chairs: Mary Secco, IBE Secretary General and Action Amos, IBE Vice President Africa Empowering Youth to Raise their Voices Chair: Lorraine Lally (Ireland), co-chair of the IBE Youth Team Psychologic treatment and self-management of epilepsy Chair: Gus Baker (UK)

2021-09-15T10:01:47+00:00September 15th, 2021|

Report from the Roundtable on the Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders

Download this report in .pdf format On 16 July 2021, ILAE and IBE hosted a virtual roundtable discussion with over 160 participants from 50 countries including representatives from Ministries of Health, Education and Employment to Inspire a Decade of Action guided by the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. Highlights and additional information are available below. Full recording of the roundtable, including the interventions by representatives from the Ministries of Health/Missions of Lesotho, Russia and Uruguay can be accessed at https://youtu.be/6hcD9jpMu08 Past, Present, Future – Action to Address Epilepsy Road to the Resolution and Action Plan Prof Alla Guekht, ILAE Vice President Prof Guekht gave a presentation on the progress and major milestones since the launch of the Global Campaign in 1997. Watch her presentation and learn more about the 2020 Resolution and the Out of Shadows campaign. Draft Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders Dr Tarun Dua, Head Brain Health Unit, WHO Dr Dua provided an overview of the draft Global Action Plan and the process from now to the Executive Board in early 2022 and the World Health Assembly in May 2022. She invited contributions as part of the consultation ending [...]

2021-07-23T16:13:30+00:00July 23rd, 2021|

Employment Opportunity at IBE

Due to the retirement of its Executive Director in December 2021, IBE invites applications from suitably qualified candidates to be considered for the position of incoming Executive Director. The role involves the provision of overall guidance and support to the leadership of IBE and the provision of direction and management of all aspects of administration, growth and development of IBE, with specific responsibility for implementing the IBE strategic plan and policies. Candidates will be required to have a university level qualification, a minimum of eight years’ experience in a similar role in an international organisation, and be fluent in both written and spoken English. Knowledge of a second widely-spoken language would be an advantage. Salary will be commiserate with qualification and experience. Interested candidates are asked to submit their CV before a deadline of 30th August 2021. A short-list of candidates will then be invited for interview. IBE is an equal opportunities employer. Submit your application here

2021-10-06T09:13:49+00:00July 22nd, 2021|

Epilepsy and Pregnancy – Survey report

While the majority of women with epilepsy will have successful pregnancies, it is vital that women of childbearing age are fully informed on all issues relating to epilepsy and pregnancy. Given that up to 50% of pregnancies are unplanned, it is important for women that they are aware of the risks involved. Getting the right message, to the correct audience, in the most appropriate format, is key. Mindful of this, a working group of young women and medical professionals, created by IBE, is producing a multi-faceted toolkit to act as a guide for women of childbearing age. It will be developed to be user-friendly, culturally relevant and visually engaging. It will be available with print, web and social media in mind and with any medical information validated by the medical members of the project team. As a first step in this major campaign, which is being piloted in Europe, a survey was carried across the continent in February with almost 900 women taking part. We are pleased to share with you the main report from the survey, which we believe is of critical importance and which highlights a number of issues of concern with regard to current knowledge and the [...]

2021-11-18T16:19:10+00:00July 14th, 2021|

International Golden Light Award Winners 2021

Golden Lights at the 34th International Epilepsy Congress The IBE Golden Light Awards are an opportunity to recognise and reward young people affected by epilepsy - either because they have epilepsy or have made a significant positive impact on the lives of others who have the condition. The aim is to show that people with epilepsy do not have to be defined by their epilepsy but who embrace the call of the International Bureau for Epilepsy to ‘bring epilepsy out of the shadows and into the light’. This year 19 worthy candidates, nominated by their chapters, will be presented with their awards during the IBE Day at the 34th International Epilepsy Congress in September. By attending the virtual symposium, you will have the opportunity to hear them recount their remarkable stories and see them receive their award. The IBE Day takes place on Wednesday, September 1st and you can find out more about the programme and how to register at: https://www.ibe-epilepsy.org/ibe-day-2021/ Lynna Held, Germany Lynna is a board member (Vorstandsmitglied) and secretary of Deutsche Epilepsievereinigung (DE). She is dedicated to the development of the self-help-group "Junge DE", for younger members within Deutsche Epilepsievereinigung. Here she involves other young members [...]

2021-09-15T15:28:14+00:00July 6th, 2021|
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