An update from Stefanie Pagel, of Deutsche Epilepsievereinigung – an IBE Chapter in Berlin, Germany
Today we are excited to share the latest activities of our federal organisation, which of course have been a tremendous challenge with respect to the corona pandemic including its statutory restraints.
If you are unfamiliar with our work, here is a brief summary: The German Epilepsy Union (Deutsche Epilepsievereinigung) is a non-profit and non-governmental organisation and recognized nationwide association of German epilepsy self-help. In an alliance between national associations, regional self-help groups, government representatives and the International League against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE), we work closely together to create a world in which a person’s life is not restricted by epilepsy.
We publish a lot of print-material about epilepsy, which we offer “for free”. We print books around epilepsy as well and a magazine called “einfälle” which is edited four times/year (with 5000 copies and a big reach in hospitals as well as in doctor’s offices). For the administrative work, related to the organization of seminars etc., we have an office in Berlin with two employees, working there full-time. The management board (“Vereinsvorstand”) is working on a voluntary base, with no financial compensation. Unfortunately we were forced to cancel most of our regular seminars and workshops aimed to promote education and training for concerned people. We decided to develop a digital realization of the many projects instead, e.g. inviting our members, partners and colleagues to meet up on platforms in the World Wide Web. “Can you hear me…now?” was in fact the most common sentence heard this year.
Anyway, our core event, the national Day of Epilepsy (Tag der Epilepsie), had to take place in the virtual world the same as our annual general meeting to vote for a new president, Mrs Burmeister, and finally we asked ourselves, why not jump on the train to announce a photo competition visually showing how our members and relatives perceived the corona pandemic in the current life, mostly at home.
Finally, the rising star of our organization is the Young Self-Help Group called “Junge DE” in which people from sixteen up to the mid-thirties aim to advance and disseminate knowledge about epilepsy. To be honest, it is remarkable how they cope with the situation by simply switching their onto the Zoom platform without any fear or inhibitions at all. Thanks to the professional assistance of a virtual communications company, they are being taught to make short film clips raising awareness for certain activities or situations like going swimming, studying at university, taking the driving test, etc.
Despite an uncertain future, it is important for us to pave the way for concerned people by sending out a clear signal to let you know that you are not alone, we are still there for you and that we can get through this together as you not only learn how to live your life with epilepsy but also how to survive social distancing for the sake of staying safe.
