We are a registered charity dedicated to helping anyone affected by epilepsy sleep with reduced fear. More than that we are an online community of diverse individuals from across the country together as one voice.
We were founded in 2010 by Sallieann Gould whose now adult son is diagnosed with a form of severe epilepsy - Lennox Gastaut Synrome. Having little to no support available in 1992 the only option to help her son was to learn as much as possible by borrowing and purchasing every available book about the subject. 8 years later through a friendship with an epilepsy nurse she was asked to give a talk at an epilepsy nurse conference leading to the further learning opportunity of being accepted on merit into university to study epilepsy alongside nurse specialists. The internet by this point was beginning to bring people together looking for advice, information and support on Yahoo forums. Pubmed gave access to research papers feeding the thirst to understand epilepsy. Within months of joining Facebook Sallieann began Epilepsy Sucks (now ESUK) small fundraisers were held to help individuals who needed special equipment for their children initially. At the end of 2010 research turned up the recommended use of ‘breathable pillows’ to prevent death from epilepsy in the 70’s. A small team was formed and this became Epilepsy Sucks main fundraising focus. In 2011 another mother sat in front of per PC and typed Epilepsy Sucks!! and found us just days after her son had tragically died in bed, cause of death was recorded as suffocation. This was the motivation needed to reach more people and by the summer of 2012 it was done. We became registered charity Epilepsy Sucks UK.
In the early years we were asked ‘why the name?’ the answer is.... If someone’ else out there is so despondent that the only thing they can think of is epilepsy sucks!! we hope they find us before it is too late.
Now together with a small team and the help of our donors, supporters and friends 100s of sleep-safe anti-suffocation pillows are funded each year.
Our trustees have all made and still make a significant contributionton to our charity. Each and every one of them brings a unique set of skills and experience to our organization. Compassion, understanding and knowledge being the most abundant.