The $10,000 Westfield Local Heroes grant contributed to the operational costs of the association’s annual Camp Twitch help in October 2018. Camp Twitch brings these individuals together in a safe and welcoming environment. The promo of the competition in the mall was amazing and definitely helped raise awareness of what Tourette Syndrome is and the Association.
When Robyn Twemlow’s daughter was diagnosed with Tourette Syndrome aged nine, she had no one to turn to for support, information or advice.
She didn’t even know of anyone with the syndrome, which added to her isolation.
“At the time, my husband and I didn’t know anything about Tourette’s,” says Robyn. “Amid the complete and utter shock of the diagnosis, there was nothing – no website, no support groups, nothing.”
So, Robyn set about creating her own organisation to connect with others and to offer a friendly ear to families and those who have Tourette’s.
That was five years ago and now, through setting up the Tourette’s Association New Zealand, Robyn has established a support network across the country, raising awareness in schools and the wider community.
Robyn is hands-on and multidimensional. She visits parents, gives talks at schools, manages the organisation’s website and lobbies the government to have the condition recognised as a disability.
She has also set up and runs Camp Twitch, an annual gathering of children and young adults with Tourette Syndrome, where they can be themselves without fear of bullying or ridicule.
One little boy who attended Camp Twitch nominated her as his hero in a school writing exercise.
“He said going to Camp Twitch was the first time he’d felt normal and not different,” Robyn says.
“That really touched me and made all the hard work worthwhile.”
For further information on the Westfield Local Heroes program, click here.