Updated: Nov 9, 2018
On June 18th 2015 Epilepsy Positivity was created on Instagram (www.instagram.com/epilepsypositivity) and Twitter (www.twitter.com/epilepsyposi) with the aim of connecting and supporting people affected by epilepsy, as well as educating the general public.
Epilepsy Positivity has reached over 20,000 followers on Instagram and over 9000 followers on Twitter and continues to grow each day.
Getting people who are affected by epilepsy involved with the decisions we make is our main focus. From involving users in our projects to allowing people to share their experiences and ask questions to the community, we aim to continue ensuring that the voices of people affected with epilepsy are heard.
For example, in 2016 we asked users to send in photos of themselves holding 'Epilepsy Positivity' signs to put together as a header for our social media.
Then, in 2017 for Epilepsy Awareness Day (Purple Day - March 26th) we asked users within the Epilepsy Positivity community to send in videos and photos related to their epilepsy experiences (see our homepage for the full video).
Now, exactly 3 years on, the Epilepsy Positivity website is being launched.
To go the website we wanted to have a slogan which fitted with our name and aims. We asked on Instagram for people affected by epilepsy to come up with a slogan for us. We selected our favourite four and took to our Twitter to create a poll so the winning slogan could be selected by the Epilepsy Positivity community. In the end, we decided to combine the winning two slogans and our name:
"Seizing positivity over seizures, one brainwave at a time"
Over the last month Instagram users have also helped to make the decisions for many of the features of this website, including the your stories page and epilepsy research features, as well as send in photos and comments to use throughout the website. Take a look at these different web pages to gain a better understanding of why we feel these sections of our website are important.
If you have any thoughts on what else you would like to see on our website or any epilepsy related topics that you believe need more attention please email us at firstname.lastname@example.org.
The hope for the future is to continue to engage people who are affected by epilepsy and work towards a world where the condition is more widely understood and respected.