Something on the Brain – speaking out about Epilepsy, was born out of a desire to raise awareness of epilepsy and redefine the way that the condition is thought of. Our mission is to take the message onto the streets and into schools and universities, using our ‘Speaking out Mike’.
Something on the Brain – speaking out about Epilepsy , was born out of a desire to give epilepsy a much needed voice.
Our vision is a world where: Communities accept and understand what epilepsy is. Everyone with epilepsy feels comfortable talking about his or her condition without fear of being judged or discriminated against. People know the right thing to do when someone has a seizure.
So we want as many people as possible to join in this campaign and get behind the ‘speaking out Mike’ (check out our SOTB Champions to see him in action!). We want to connect with people all over the world and encourage them to join the epilepsy awareness revolution!
Meet our legendary ambassadors, who feel as passionately about Epilepsy awareness as us!
Charlotte PettleyUniversity of Life
"It is important that we raise a greater awareness of epilepsy and redefine the way that the condition is thought of, putting stigma to an end and providing the best support to those affected. In order to do so we need to start from the ground up, educating schools and Universities around the UK."
Pinky Lilani CBE DLFounder and Chairman of Women of the Future
"Epilepsy awareness is vital - 65 million people globally have the condition- so it is important that people know the facts and that we dispel the myths. It can make a huge difference."
Dr Oliver Charles CockerellConsultant Neurologist
"Epilepsy is an important illness that affects as many people as diabetes and asthma. Unfortunately it suffers from lack of public awareness, which in turn has resulted in much prejudice about the disease and its sufferers. It now, however, can be treated effectively and safely enabling most patients to live normal lives. I have no hesitation in giving my full support to this charity in its work."
Dr Howard RingLecturer, University of Cambridge
"Improving epilepsy awareness in the community at large will be important for people with epilepsy and it will be important for people without epilepsy. For people without epilepsy it will help replace ignorance and anxiety about the condition with understanding and acceptance and for people with epilepsy it will reduce marginalisation and the risk of being misunderstood and mistreated."
Professor Simon Baron-CohenProfessor, University of Cambridge
"Epilepsy can be triggered by flashing lights, reading words, sleep deprivation, fever… the list goes on. We need greater awareness and understanding of epilepsy to be able to offer the best support for those who suffer from it. More research into its neurochemical causes, towards even better treatments, is vital."
Anne-Marie KrukMy story
Sometimes life throws us curveballs, and when I was diagnosed with epilepsy in 2008, it was certainly a curve ball.
I was in my early 20s at the time I was diagnosed, working in fashion and enjoying life! After I had a seizure in my open plan office just before Christmas, and another one on Valentine’s Day, I was diagnosed with epilepsy.
I was terrified.
To me epilepsy was a complete unknown, I knew absolutely nothing about it other than I thought that people with epilepsy were triggered by flashing lights. I was so scared that people would look at me differently, and that my life would be changed (and not in a good way) forever.
So I decided I needed to learn more about epilepsy, I figured that if I knew more about it I would feel less scared and able to come to terms with it. What I realised very quickly, is how many people actually have it, 65 million in fact, and 600,000 alone in the UK. I had never realised how many people it affected. I also discovered that only 3% of people are triggered by flashing lights; a lot of people, including me, don’t actually know what triggers their seizures.
A lot of my friends and family also didn’t know anything about epilepsy, and I decided I had the power to change this, I had the condition and was passionate about people learning more about it. This is how ‘Something on the Brain’ was born.
Something on the Brain is focused on raising awareness of epilepsy in the general public, so that people with epilepsy know they have the understanding of the wider community.
Starting the charity has been a huge adventure and there is still so much to come! There is a website (obvi as you’re on it! ), a Facebook page and a Twitter account, and we created fact and first aid videos, with our very own acronym ‘STAR’. There have been themed bowling nights, Christmas cocktails, and other fundraising events. In 2016 we started going out to schools and colleges with our 'Brainbusters' awareness program, an education program where young people with epilepsy go out and share their personal stories with students.
Mike, the charity inflatable microphone, is a really important part of the charity. He represents speaking out about epilepsy and my hope is to get Mike pictured all around the world and start a ‘speaking out’ revolution. So far we have had some pretty cool people pictured with the Mike – including Cate Blanchett, Muse, Rory Kinnear.
I have had the chance to talk at several conferences and summits, and all of this helps in raising the awareness. In 2014 I was lucky enough to be awarded MBA Woman of the Future award for my work with the charity. It felt like I had won an Oscar 😉
Even though I would never have chosen to have epilepsy, I do feel that having it has changed my life in a very positive way. It has made me realise that living life to the full is so important, that if you want to do something just do it, and that it is important to look around and smell the roses.
Please take the time to read through the info on the website (we have kept it short and sweet ) and thank you for helping raise awareness of epilepsy!
AMK (otherwise known as Anne-Marie)