Tourettes Action

Registered Charity Number 1003317

Total raised
£17889.42 + £2962.63 Gift Aid = £20852.04
Fundraising
£14389.12
+ £2632.38 Gift Aid
Donations
£3500.30
+ £330.25 Gift Aid

About Tourettes Action

Tourettes Action supports people living with Tourette Syndrome (TS) and their families

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If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at Wonderful.org, you can be sure that every penny raised will reach Tourettes Action.

Current fundraising pages

Manchester Marathon 2020

Tourette Syndrome is probably not what you think it is.
Up until about 8 months ago, I believed Tourettes was just about involuntary swearing. In fact only about 10% of Tourettes sufferers have that aspect of the condition. The main thing you will see or hear are involuntary movements or noises, usually around the face, neck, shoulders, though really anything can be a 'tic'.
When I was a child, many years ago, I had many different tics that came and went and evolved. The thinking at the time was that you grow out of them (many doctors still think this). Really as you grow up you just learn to disguise them (after being told you look/sound silly). I've only just twigged I have Tourettes.
There is currently no cure for Tourettes and tics are just the tip of the iceberg. It is commonly mis-diagnosed as a behavioural issue but does have strong links with OCD. For me, if it happens to the left - it will happen to the right. Left eye squints, so does the right. Left shoulder tics, so does the right. The list goes on. As for the counting, things happen a certain number of times. It is different for everyone. There is no typical case of TS. The main thing people with Tourettes want is to be accepted and allowed to tic without feeling embarassed (suppressing tics can hurt and is a distraction from what you're doing eg. in class trying to learn).
By running the Manchester Marathon I hope to raise awareness as to the struggles of living with Tourette Syndrome and raise funds for Tourettes Action who help families living with TS.
Tourette Syndrome: Inherited neurological condition causing
involuntary and uncontrollable motor & vocal tics which can be painful, disabling and affect the quality of life of over 300,000 people in the UK.

Pete Andrews

  • Disability

Shaving for Tourette's

Tourette's Syndrome is a neurological condition which causes involuntarily movements and noises called tics. It usually comes with a lot of other conditions attached to it such as ADHD, depression, OCD, anxiety and autism.
Back in 2015 I went through a very dark period of my life. I was struggling with anxiety and depression to a point where I didn't want to live any more. This is where the first tic occurred. I've been living with this condition now for over 4 years.
What causes the onset of Tourette's Syndrome is not well understood. It's often conveyed as a chronic childhood condition however for myself my onset was at the age of 24. I had no tics as a child. Adult onset is not even something that is officially recognised in the diagnostic manuals. I, like many others, had to fight for a diagnosis because of a lack of understanding from doctors because of this age of onset and also because, at the time, my tics were not causing me to use inappropriate language or gestures. There is a big misconception around Tourette's Syndrome that it is all about swearing when it's only a minority of those with it who have coprolalia – obscene language.
However at the end of 2018 I was in the end diagnosed with Tourette's Syndrome. I had to fight for this diagnosis, a fight which Tourette's Action aided me in when things looked bleak, they gave me hope and advice that I could argue against my discharge from a neurological department at a hospital.
In that year since my diagnosis Tourette's Action selected me to participate in a exchange programme with 3 other countries to The Netherlands. A trip which has created memories that'll last me a life time as well as put me in contact with ticcers from these countries. Despite the short amount of time we have had to get to know each other, the level of understanding and empathy we've shown to each other I consider these people as friends. We all had a tremendous time and it was Tourette's Action who played a part in making it possible for the English young adults to come along to that European exchange.
So now I feel it is time to give something back.
I consider myself extremely lucky, I have an amazing ability to suppress my tics in public spaces for long periods of time. This is physically and mentally exhausting however not everyone with Tourette's has such an ability. People living with Tourette's Syndrome have often gotten verbally or physically abused, had misunderstandings with people of authority, including being arrested. Some have even taken their lives because of how difficult the reactions are to live with from members of the public and bodies of authority. Too often this is what makes this condition so disabling to live with. It's other people's presumptions and reactions of people who live with Tourette's Syndrome.
Society isn't built to accept difference. Campaigners like Tourette's Action have been breaking down barriers for people with disabilities for decades. This includes barriers in diagnosis, education, and employment. For this is continue we need to spread awareness and acceptance of conditions like Tourette's Syndrome.
To this end I've decided to do my part in raising awareness and acceptance and also fund raise for Tourette's Action to continue to fight for people like myself and to help them also have the good quality of life they so deserve.

Dylan Frost

  • Disability
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