Dear Friends,

IBE - International Epilepsy Support

Martin Brodie, IBE President

When I wrote my last message to you for IE News, the world was in a very different place. Since then, everything has changed. We have watched in horror as first China and then most of the rest of the world has been invaded by COVID 19, a virus to which none of us has immunity. As I write, close to half a million people worldwide have been infected, but it is likely that there are also a large number of unidentified cases. Almost 19,000 people have died, and this number grows daily.

How long this virus will continue to plough an unchecked course through the world’s population before we have a weapon such as a vaccine with which to fight it, is not known. And when we do come out at the other end of this nightmare, the world will be a very different more nervous place. In the meantime, we must all take all the precautions to which we are directed by our national governments in order to safeguard ourselves and our loved ones.

If you have epilepsy or care for someone with epilepsy, you are probably aware that there is no evidence that COVID-19 has a direct effect in worsening seizures. However, in some places continued access to antiseizure drug may be causing problems
and, if diagnosed with the virus, the medication taken to lessen the symptoms may worsen the seizures. The stress to which we are all exposed will also have a negative impact on our health and peace of mind. And, of course, with medical personnel redirected to deal with the virus, there are likely to be delays in clinic appointments.

I don’t need to tell you that, like other organisations around the world, COVID 19 has had a major influence on IBE’s plans for this year and many of our activities will have to be curtailed, postponed or cancelled. Most of the regional congresses scheduled for this year including the  11th Latin American Epilepsy Congress in Medellin, Colombia in May and the 1st North American Epilepsy Congress in Toronto, Canada in September, have been postponed till 2021.

The 13th Asian & Oceanian Epilepsy Congress in Fukuoka, Japan in October may still happen, if things settle down over the summer. This means that our Golden Light Awards and the special IBE programmes at the postponed congresses will not now take place until next year. We have received nominations for the Golden Light Awards in Medellin, and we will carry these over to 2021.

The 34th International Epilepsy Congress, which was planned for Paris 2021, will now happen in 2022. This important biennial global congress has always been the event at which we hold our General Assembly and manage the handover of the Board, with one term ending and the next beginning. We are now looking at how best to react to this unprecedented change and will be coming back to you soon with a revised plan.

While activities that involve face-to-face meetings and travel have now been paused, with an associated temporary reduction in staffing levels, IBE still remains ‘open for business’. We will continue communicating with our chapters and take the opportunity to plan for bigger and better events when we come out at the other end of this global crisis.

Some ongoing activities include:

  • Our Promising Strategies Program 2020, with funding from the BAND Foundation, will soon announce projects in Africa, which have been selected for support
  • International Epilepsy News will continue to be published and our websites and social media platforms will remain active
  • Planning for International Epilepsy Day 2021 will soon get underway following our usual timescale
  • The advocacy project in Africa, involving chapters in six countries, is still active and will conclude in the coming months. We will bring you the results on Phase 1 of this important activity as soon as we can.

And we will, of course, continue to plan for 2021!

While I am disappointed that IBE had to cancel some of our most important activities for this year, I appreciate that our chapters around the world are experiencing similar difficulties. These are trying times for all of us, but we need to prioritise the safety of our families and all those who are dear to us. This must remain foremost in our minds for the present. It will be a tough time for us all, and tougher still for those who have family members or friends who have succumbed to the virus. However, with a shared and positive focus we can get through this challenge and look forward to brighter times ahead.

Stay safe!

Martin Brodie
IBE President