What You Told Us

Six months ago today (can it really be that long already?) I started the year with a special announcement – that 2015 is Touretteshero’s fifth year, and as part of the celebration I asked readers to complete our birthday survey. We wanted to take the opportunity to reflect, improve and set ourselves up for the next five years. And to do all this we asked for your thoughts and ideas.

At the time we were hoping for 50 responses to the survey, but by the end of January we’d got an overwhelming 230 completed surveys and that meant we could close it early as a result. If you took part, thank you so much again.

Six months on, now feels like a good moment to share what you told us…

How You Find Us and What You Use Us For
People initially hear about Touretteshero from a wide variety of sources ranging from online links and meetings in person, to TV appearances.

Most of you visit the site a lot and you’re mainly here to read the blog (67%). So thank you for your interest in my on-going antics. You also come to find out more about what we do, and to get general information about Tourettes Syndrome. This is important because I want to make sure we offer really good quality informal advice and support about one of the most frequently misunderstood conditions on the planet. If you’ve noticed that there’s something we’ve left out, or you have an unanswered question, please leave a message in the comments section below, or contact us.

Are We Achieving Our Goals?
You showed us that we’re reaching a diverse group of people, including a large number who were previously not familiar (12%), or were only somewhat familiar (62%), with Tourettes, as well as those who had a personal connection to the condition. This is great news because Touretteshero is for everyone, with and without Tourettes.

Even more encouragingly we appear to be making great progress towards achieving our goals, with 82% of you saying that we’re “making a big difference at increasing understanding and awareness of Tourettes” and 75% saying we’re “widening public appreciation of difference”. Your answers also suggest we’re making a significant difference in reducing feelings of isolation and improving resilience. All of this is very promising for the future.

What You Want More Of
You’ve asked us for more video and audio content, more campaigning work and more work with healthcare providers.

And we’re listening!

As a small organisation it’s not always easy to keep up with our incredible workload but we’re adding new content all the time and we’re creating new videos as often as possible. Look out for the film we made during the Idea Amplifier weekend that we’ll be ready to share soon.

Post-General Election it looks like we’ll be concentrating even more effort on campaigning over the coming years whether we like it or not. Have a look at The Longest Five Years of my Life and Choice Cutting as examples of the work I’ve been doing in this area.

And in terms of working with health care providers, we’re ready to deliver Tourettes-specific training in all sorts of different workplaces – schools, hospitals, police stations, museums, galleries and theatres. If you know of anywhere that’s crying out for training please let me know.

Generally speaking most of you simply want us to “do more of the same” or “more of everything.” And that’s great news because that’s exactly what we’re doing!

What You Don’t Like
Every silver lining has a cloud and we wanted to find out what you didn’t like just as much as what you love. When it came to the website what you liked least was the navigation and functionality, as well as the design and layout.

We’ve been working hard with our long-suffering web developer Dan to make improvements to how the site works. So far this has all been about what goes on behind the scenes, but I’m excited to announce that we’re making some big improvements to our shop that should be ready in the coming months, and longer term we’re planning to bring the site completely up to date and make it easier and more enjoyable to access, particularly if you’re using smart phones and tablets. We want to make sure you’re enjoying Touretteshero wherever you are and whatever you’re doing!

Here’s how we’re aiming to improve:

• Update our web design so you can access older blog posts and find other content more easily

• Add more audio and video content, including interviews, performances, and animations to help bring the site to life

• Indicate how your donations will be used

• Make the shop more user-friendly and prominent across the whole site

• Expand our range of products to include more tic-inspired t-shirts and biscuit-themed products!

• Make it easier for you to purchase products

What Next?
In the coming five years you want to have more:

Creative events for children and young people
Creative events for adults
Work with schools/colleges

And we want to be able to deliver all of these!

To achieve all this takes time and money, both of which are in short supply. I’ve never been busier, but this is an exciting time for Touretteshero and I’m determined that we’ll build on the achievements we’ve already made.

To help me with my mission to change the world ‘one tic at a time’ please do consider making a donation or buying something from our (soon to be improved) online shop. If you want to be involved in volunteering at one of our events get in touch and of course remember we always need tic-inspired works of art for our gallery.

Please use the site as a springboard for your own creativity and help us celebrate and share everything that the unusual neurology of Tourettes brings to our lives.

Finally, I’m really excited to be bringing our show Backstage in Biscuit Land to London later this year. You can find the details here. All of our performances are relaxed, which means if you make noise or move about a lot you’re more than welcome. Please do come if you can. I can’t wait to show you round Biscuit Land as we celebrate 5 years of Touretteshero!

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