A few weeks ago, on June 7, it was European Tourette Syndrome Awareness Day (or ETSA)! This day we use to attract as much awareness as possible for Tourette, especially from te media. I know in America you have the entire month, but we are very happy to have this day — it’s only the second time, and we wanted to make it as big as possible!
This year, we decited to work together and try to come up with a great idea to attract awareness. First we were with three organizations in the Netherlands and Belgium, but later we pitched it in the European meeting in Paris and everybody loved our idea and so the TSelfie was born and made into a huge success!
In case you’ve missed it: we invented te ‘TSelfie’, the Tourette Selfie (conviniently spelled with TS at the start. ;) This is a selfie taken with a wink, one of the most common tics! This way, we wanted to attract attention and also focus on the fact that Tourette is more than just swearing, there are a lot of other tics too!
We’ve worked very hard in attracting publicity and local celebraties, to attract even more attention. We also made a website, www.tselfie.eu, were we posted all the TSelfies and gave the public some explanation about Tourette, as well as links to all the different associations in Europe.
On the day itself, it turned out to be a HUGE succes with TSelfies from lots of celebraties and a LOT of people from a lot of different countries! I’ve seen TSelfies from America and India and almost every country in between! We even got a TSelfie from the Hungarian waterpolo team (in bathingsuite, of course…!!!), who were the Olympic champions from 2000, 2004 and 2008!
In the end, we got about 824 TSelfies from all around the world, which I made into a collage! I know there are more of them, but there were so many, there is no way to know for sure whether we got them all! I am so proud of what we’ve accomplished and I can’t wait for next year!
All these people supporting our cause: Tourette Awareness! It’s very humbling to see how this many people who I don’t even know, support us by posting a TSelfie, which we invented in a impulsive and creative group right here in the Netherlands and Belgium.
Besides the TSelfie, I was also on national TV on June 7! They taped here at my house and the shops nearby and at 11 p.m. I was on TV! I was very nervous, because I thought (for no reason, of course) that they weren’t gonna air it, but they did and I got a lot of great messages from people about it!
You can see it here (it’s Dutch): http://www.hartvannederland.nl/top-nieuws/2014/leven-met-tourette/
And this past Monday (June 23) I was in a magazine about being an educator with a disability and today I will finally officially graduate and get my diploma! More on all of that soon!