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TS Champions - Class of 2023

Our fabulous inaugural intake of TS Champions completed their year as ambassadors, and what a fantastic job they did!

The Tourettes Action TS Champion programme brings together young people to advocate for and talk about TS and Tic Disorders in their local community and before their peers at school and clubs.

Each of our amazing Champions carried out their tasks with enthusiasm, passion and pride, and we are incredibly proud of all they achieved during 2023.

Meet our 2023 TS Champions and see a snippet of what they achieved during their year as TS Ambassadors.

Wilamena Dyer

Wilamena is a specialist musician at a music school playing cello and percussion, who also enjoys playing basketball and spending time at the beach. 

"I got diagnosed with TS at the age of 9 but I have had tics pretty much all my life. It has always been my mission to educate others about what TS actually is. I also think it is really important to get rid of the stigma that the media has created around it.

I always make sure to tell my classes at the start of each year all about my TS because I think that's the best way is to educate others. That way, people can fully understand and there is less chance of people making comments. As I have got older I have got a lot better at explaining my tics to others when people ask about it

This is why I started writing my blog TicTastic and making videos. I wanted to be
able to search for TS and find positive stories about a young girl growing up with TS while still thriving and doing her best. Something that makes me very proud is
that medical services have started using my blog as a resource to show young people who are getting diagnosed with tics. The Evelina Hospital, Great Ormond Street hospital and CAMHS have all started pointing people at my blog for information which is a big achievement for me as it is my main goal to help the TS community".

Wilamena gave a live interview on Good Morning Britain talking about TS.

Lily Maguire

Lily has a passion for art and her goal is to become a secondary school art teacher.

"I’ve had some mixed reactions to my Tourette’s. I have coprolalia so people say I’m rude, mainly by external teachers and even after a brief explanation they still proceed to think badly of me. But other people can be really understanding. When my tics were mild my German teacher took such an interest to my TS, she researched it, asked questions and tried to help me in any way she could, even through horrendous tic attacks. One of my learning support teachers also has helped me in becoming more confident in myself, he bought a book written by a social media influencer with Tourette’s to try and support me better. As well as that, my friends and family are amazing, they are so inclusive and patient with me and help me as much as possible.

Being a TS Champion will help me become a lot more confident in myself and I would be better at public speaking. I would love to break the stigma and the myths surrounding TS. I want people to see what it's like living with the condition and how to help people with it".

Read Lily's blog here.

Lola O'Keefe

Lola is an aerial circus artist who also enjoys swimming, Netflix, exploring new places and chatting!

"I have had tics since I was around 8 years old, although they were very mild at this age. Once I turned 13, I progressively began getting quite visible tics where my neck would jerk and I began having vocal tics, this is when we went to the doctors. 

I could say I have the full TS shebang!!! I now experience a wide variety of complex motor and vocal tics including coprolalia. I decided for my GCSE English speech writing assignment that I would write about living with Tourette’s. The speech went incredibly well and it allowed the other students to really understand the condition and all the struggles that truly do occur in our day to day lives, but also that many of us find laughter as our medicine. Overall I have had a positive experience from others towards my Tourette’s and the majority have completely accepted that this is me.

I think I will be an effective TS champion as i've learnt so much about my own condition through Tourettes Action and would like to spread my knowledge to others and have TS widely accepted". 

Lola did a Skydive as her fundraiser, and raised an incredible £3,423 for TA!

Maisie Speight

Maisie enjoys singing, doing crafts, listening to music and watching Harry Potter.

"I first started ticcing at the start of 2020 with a neck tic, but after a week I got hitting and vocal tics that got progressively worse to the point where I had developed coprolalia. I was eventually diagnosed in May 2021. I tried not to tic at school because I was embarrassed and didn't want to disrupt the class, but I have now very slowly started to tic more in class which makes me feel more confident in myself.

When my SENCO told my teachers there were mixed signals about how they dealt with it, some didn’t really care because they were not very educated about TS, and other teachers tried to understand but still did not really grasp some of the access needs that were put in place to help me get through the day without going home. When I told my friends most did not believe me, so I found new friends who are so lovely, brilliant, and so understanding.

I think I will be a very responsible TS champion because I want to teach and educate people, especially children in secondary schools and teachers about how TS is not all about swearing and moving weirdly but is an extremely hard disorder to live with".

Read Maisie's blog here.

Lily Richards

Lily likes to play football, play the guitar and enjoys writing stories and creating new characters.

"I’ve experienced tics with advantages and disadvantages. I started with motor tics, but vocal tics soon joined in too. I have weekly Cognitive Behavioural Intervention Therapy and daily medication. I’ve also been going to support groups which has helped me feel less alone.

I’ve recently started ticcing in lessons which has been difficult but useful. I’ve had a lot of reactions, being in a high school full of pupils. I’ve had mean reactions but also sympathetic and kind reactions. Some people attempt to get me to repeat words I wouldn’t ever say and some even copy my tics and laugh about it.  But most have ignored it or responded in a way of acceptance.

If I could help one person with tics it would feel worthwhile. So that they wouldn’t have to go through the feeling of weirdness that I did".

Read Lily's blog here.

Saphia Baktout

Saphia enjoys reading, listening to music, taking walks, swimming and watching TV.

"I am 14 years old, and my tics started around age 9, then at age 13 they had a big flare up, both vocally and physically. My tics are painful, very intrusive and have a big impact on my life - it's been a long, hard journey so far.

I did an assembly at school to explain about TS, and find I must often explain to strangers that I have it as they are not always understanding. Sometimes people are rude even after I've explained, but on the positive side, some people are very understanding.

I think I will be good as TS Champion as TS is my life. My determination and willingness to spread awareness will make me a good representative for the charity".

Read Saphia's blog here.

 

For more information about the TS Champions Programme, please email us.

We would like to say a huge thank you to Tourette Association of America (Mid Atlantic Chapter) and NJ Center for Tourette Syndrome (NJCTS) for their valuable help and support in creating our TS Champions Programme.