Issued by City of York Council
The Lord Mayor of York, Councillor Julie Gunnell, is meeting four North East mothers of children and adults with Tourette Syndrome next week (Monday 30 September) as they tour England to raise awareness of the condition.
Donna Emmerson, 30, Lizzy Mienik, 40, Jac Campbell, 50, and Eileen Darling, 60, are calling their drive to all 52 English cities The Tourettes Awareness Challenge, because they are aiming to complete their mammoth road trip in just over ten days, averaging five cities a day.
The ladies plan to meet with the Mayor or senior councillors in every city and hand over an information pack about Tourettes Syndrome – covering health, education, employment and social support. They will visit York on the first day of the tour, which will start in Newcastle, ending it 2,200 miles later, on Thursday 10 October, in Carlisle.
“We intend to spread the word that there are people with Tourettes in every city in England – and they need understanding and support,” said Donna.
“It’s a simple message, but we want to people to know that it’s a complex and much misunderstood condition.”
The Rt Hon Lord Mayor of York, Councillor Julie Gunnell, said: “Tourettes is a condition that not only affects the sufferer themselves, but also their family and carers.
“As a mum myself I have huge respect for what they’re doing and am looking forward to providing them with a welcome pit stop and finding out more about their work.”
The four women, who will be wearing the distinctive black and green T-shirts of the charity Tourettes Action, have nine children and eight grandchildren between them – including six with Tourette Syndrome.
Eileen, who has both a son and a grandson with Tourettes and learning disabilities, said: “I think most people know that people with Tourettes make sounds and movements they cannot help called tics.
“But what they don’t know is that more than 90 per cent of people with Tourettes have at least one other brain condition as well.”
Jac said: “We all have personal experience through our children of how lack of understanding about Tourettes can have a huge negative impact on people with the condition.
“Often they are mocked, abused or simply just not included. We think it’s time for that to change.”
The ladies are hoping that the road trip will also help raise awareness of the work the charity does in supporting whole families affected by Tourettes.
Tourettes Action Chief Executive, Suzanne Dobson, said: “This campaign is a fantastic idea and very worthwhile.
“We need to greatly improve understanding of Tourettes amongst health, education and support services as well as with the general public.Sadly, too many people with Tourettes suffer stigma, isolation and lack of support.
“I do hope that local authorities, individuals and organisations will come forward and help the mums make this project the success it deserves to be.”
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