Tourettes Awareness Day 2020

TOURETTES AWARENESS DAY 7TH JUNE 2020

February 2013, our son received various diagnosis, one of which was Tourettes Syndrome. We knew nobody with it, and barely anything about it other than swearing and tics.
May 2013, we went to our first support group, I went home and read everything I could about the condition.
October 2013, our first story in the Hull Daily Mail, hoping to bring awareness of Tourettes Syndrome after a member of the public stood and stared at our son for ticking in the street.
December 2013, numbers at the support group had increased due to the article and we held a drumming workshop provided by the National charity Tourettes Action. This workshop brought Beverly Sims to the group.
2014 the support group co-ordinator sadly had to step back due to ill health, I took over the reins.
March 2015, I created the facebook group, we had 13 members.
March 2016, we had increased to 22 members.
July 2016, we took a group of people to the Kingswood centre for an activity day.
December 2016, we had Christmas celebrations with family bowling.
March 2017, we had 26 members.
September 2017, I had decided to walk the Great Wall of China to raise awareness of Tourettes Syndrome and funds for Tourettes Action. We decided as a family to do another story for the Hull Daily Mail. This brought another 8 people to the group page bringing the total to 33.
November 2017, the group did a spread for the Hull Daily Mail, bringing another 10 people to the online group.
September 2018, I, and Beverley along with other members did our best to raise awareness of the condition in the City, we went on training with Tourettes Action to deliver talks in local schools. We attended TIC FEST and connected with local families, we also became Hull 2020 Champions, 1 of 100 charitable organisations networking across the City. By the end of September our group numbers had increased to 103.
October 2018, along with an amazing group of people we became TIC (Tourettes-syndrome, Inclusion in the community). We also took a coach full of members to Blackpool illuminations.
November 2018, we flew to Belfast to attend a weekend of talks delivered by Tourette Alliance. We had the pleasure of attending training with MEd Susan Connors and met some amazing people.
January 2019, local dyslexia charity creative briefs joined us for a workshop.
February 2019, we moved into our offices in Ings Community Centre, our monthly meetings went up in size from an average of 15 members to over 30.
April 2019, we met the lovely Jonny Davidson and Paul Stevenson along with others at Galashiels.
7th June 2019, Tourettes Awareness day we went to Scotland to attend talks given by the lovely team at Tourette Scotland.

June 2019, we became a registered charity (1184015). By this point we had delivered talks to teachers in 15 schools and our members had increased to 221. We took part in the SEND National Crisis march and connected with Head Start.
August 2019, we had connected with Dr Mordekar at Sheffield Children’s Hospital and been added to the connect well website.
By December 2019, we had delivered talks to a further 12 schools including an assembly of 600 children. Joined the Autism Panel Partnership and connected with Hull Scrap store who delivered a session at our monthly group. Our monthly meetings were now seeing around 40+ members each month and our online community had increased by a further 51 bringing us up to a total of 271 members.
By February 2020, we were well under way with organising our first symposium. We had sat down to discuss our work with local MP’s and clinical leads at Hull NHS. We had landed 3 years funding from The National Lottery Community Fund. Delivered a further 3 talks and provided members with Makaton training. Our trustee panel had also seen some changes, we were joined by 3 new trustees bringing with them passion and individual knowledge.
March 2020, Covid-19 outbreak meant that we had to close the office, cancel the Symposium, and look at how we could support our members during a crisis.
7th June 2020, Tourettes Awareness Day. Lockdown rules still apply.
We have accepted 30 new members online making the total 328
We have seen a 56% increase in activity within the group
Thanks to additional funding from the Lottery we have been able to provide
• 50 care packages to help people self-manage
• 21 weighted blankets to ease anxiety, aid sleep and reduce aches
• 14 moodbeam watches to help monitor moods and share feedback without having to talk
• So far 4 sets of LED lighting
Thanks to publicity and awareness we have had
• 20 sensory care packs donated
• 6 items from our amazon wish list donated
• £1031 raised

Nothing will change unless we change it!

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