It was a completely unexpected diagnosis and when Robyn searched for information and a support group in New Zealand there was nothing to be found.
Eventually turning to social media, Robyn soon found that a friend knew a woman, Amber Murdoch, in Christchurch with a 12-year old son with Tourette’s.
The two arranged to meet and the similarities in their stories was astounding. Given that one in a hundred children are born with Tourette’s it stood to reason that there had to be other families also struggling with the same issues.
Robyn, a former journalist, contacted the local newspaper about her quest to find other families living with someone diagnosed with Tourette Syndrome.
The feedback was astounding. The range in ages, in geographic location and how Tourette’s impacted their everyday lives was extreme. There was one common thread however – every person felt incredibly alone in their struggle with Tourette’s; and they all thought they were the only one in New Zealand living with the disorder.
Deciding that this needed to change, Robyn got to work establishing a support group and the Tourette’s Association New Zealand (TANZ) with Amber Murdoch and Robyn Martinovich, another mum with a teenage daughter with Tourette’s, making up the board of trustees. The Association was granted registered charitable status by the Charities Commission in September 2013.
With an initial membership of about 20, the Association steadily grew adding to its list members from throughout New Zealand – from Kerikeri to Gore.
Wanting to bring the group together to allow others to meet those just like themselves, especially those who had spent a lifetime believing there were alone with their struggles, the TANZ team spent a year organising the inaugural ‘Camp Twitch’.
Held in Hanmer Spring in October 2014, Camp Twitch was attended by 97 people from throughout New Zealand. It was an overwhelming success and attendees are still talking about the experience to this day.
In 2015 the Tourette’s Association expand its role to also provide information services not only to its members but also to schools, those working in mental health and to international Tourette’s groups.
That year Robyn Twemlow was invited to speak at the first Global Congress on Tourette Syndrome in London in June 2015 to share her experience of establishing a support group in New Zealand. She presented a Grand Round lecture at the Christchurch Public Hospital in July and in October 2015 Robyn and her daughter Analise were speakers at TEDx Christchurch discussing the need for more support from the health sector for those living with Tourette Syndrome.
Today, the Tourette’s Association of New Zealand has over 140 members nationwide.
Our work will be guided and committed to our beliefs and values by:
Inclusiveness – we respect all people, value diversity and are committed to equality.
Participation – we value and recognise the contribution of volunteers, our members and the community.
Quality – we strive for excellence through continuous improvement to be a credible national voice.
Openness – we are committed to a culture of teamwork, collaboration and transparent practices.
“To create and sustain a charitable organisation that effectively and efficiently provides information and support to Tourette Syndrome sufferers in New Zealand, and is acknowledged by the Health and Education sectors as a valued collaborative partner.”
“To help and support New Zealand children, teenagers and adults diagnosed with Tourette’s and the family members, caregivers and friends who care for them while promoting tolerance and acceptance of Tourette Syndrome within the Community.”