About Tourette’s Association of NZ
Who We Are
The Tourette’s Association of New Zealand has hundreds of members nationwide, a team of great volunteers and a board made up of either individuals living with Tourette Syndrome or parents of children with Tourette Syndrome.
The head office is based in Christchurch however there are four support groups in the four major regions and our executive director travels extensively to deliver education workshops to schools, government agencies, community groups and businesses.
Meet The Team
Robyn Twemlow – Founder and Executive Director
Christchurch born and bred, I am married to Aaron and we are the proud parents of two beautiful girls, Analise and Eva.
Analise was diagnosed with Tourette Syndrome in June 2013 at age nine. It was a complete shock for the entire family and it has taken us on a journey that has been both difficult and rewarding, sometimes at the same time.
Starting up an organization like the Tourette’s Association New Zealand had never been on the cards but then we’d never expected to be dealing with such a complex disorder seemingly on our own either. As they say “necessity is the mother of invention” or in this case formation.
“The best thing to have happened for people with Tourette’s was the formation of TANZ. Long may you continue to provide this vital service for the children and adults alike. Without it a lot of people would still be struggling and left in the dark.” – Christine Morgan
The decision was made after meeting another mum with a son with Tourette’s and the overwhelming relief that I experienced hearing her story; a story that was so similar to mine. It stood to reason that there had to be other families in the same boat. And there were plenty.
Over the next few months I had many conversations with people who shared their stories with me and I wanted to meet them all. That’s when the idea to have Camp Twitch 2014 originated.
That camp is one of my proudest achievements to date. And that same year I was honoured when a parent nominated me for the Woman of the Year competition, of which I was one of five finalists in the Community category.
My vision for the future is for Tourette Syndrome to be understood, accepted and supported within the New Zealand health and education sectors as well as by the general public; and for those living with Tourette Syndrome to feel confident to take ownership of the disorder.
Tara Robinson – Acting Chairperson
Hi there! I live and work in Auckland and am mum to two teenage daughters (Ella and Amber). Ella suffers from anxiety and depression, and Amber has OCD, anxiety, tic disorder, conversion and APD. We’ve lived with tics since July 2017 when Amber had sudden onset of complex and severe motor and verbal tics. I see the challenges she faces both through educationally and socially, and constantly live in admiration of how she copes with the challenges it throws her.
I became involved with TANZ when I was searching for others who understood what Amber was living with and have been impressed with the genuine and valuable service that the organisation offers to what can otherwise be a lonely and scary disorder.
This is my first year on the board of TANZ, although have served as Board member and Chair at Ella and Amber’s school for 9 years, along with a number of community groups that I have connected with in my work as a Justice of the Peace.
In my “spare” time, I work full time as a business/management consultant, having set up my own business shortly after Amber was diagnosed. My areas of specialty are human resources, operational efficiency and leadership mentoring.
I’m looking forward to being a part of the team who do awesome work for so many.
Hi, I’m Hayley and I am a stay at home mum to four awesome kids, my oldest having been diagnosed with Tourette Syndrome. It was a very long and frustrating process for us getting a diagnosis of TS which prompted me to research help and support available in NZ. I was lucky enough to know someone who has TS and she pointed me in the direction of the association to which I instantly became a member. I was mainly looking for support for James, myself and the rest of my family as well as some understanding of what living with Tourette’s actually meant and how best to support James through our schooling system and life in general. The Association and camp have been instrumental in our acceptance of the disability, arm us for what is possibly to come and enabled us to make some awesome friends and support systems along the way.
After attending camp twitch a few times I finally decided it was time to take the plunge so to speak and give back to a charity that has given so much to us. Tourette’s can be such a difficult and lonely journey and I am incredibly passionate about keeping the association going for future generations who will inevitably seek help, educate our communities about the difficulties people with TS face and support others who are also on a similar journey.
I was diagnosed with Tourettes when I was 9 years old and living in South Africa. In those days it was a very unknown disorder and my parents struggled with the reality of supporting a child with Tourettes and without any support for themselves. When I was young I had a range of motor and vocal tics, some of which became severe during my adolescent years. My family moved to New Zealand in 2002; where I finished high school and attended the University of Waikato. Despite the challenges that we faced as a family, my parents never gave me any reason to doubt that I couldn’t be whoever I wanted to be. As I got older I learned to control my tics, refusing to let them control me. I am now a Registered Psychologist working at the Ministry of Education and live with my Husband Andy, in Cambridge.
I am passionate about the members of TANZ finding support and understanding, not only from the wider community, but also amongst themselves. TANZ provides the means for children and young people, as well as their families, to meet others going through the same challenging struggles. It provides them with a safe and understanding network of people where they can seek comfort, reassurance and help when necessary. TANZ has provided a ray of light to those suffering from Tourettes so that they do not have to travel, the often dark road, alone.
I am 40 years old and live in Rangiora with my wife Fiona and two daughters Caitlin and Hannah. I was diagnosed with Tourette’s at age 13, although the symptoms first appeared at age 7. I am fully aware of the daily challenges that people with Tourette’s face each day.
Despite having Tourette’s I was able to achieve my goal of joining the New Zealand police. I am currently a police sergeant in Christchurch and have been a police officer for over 13 years.
I was really inspired by the association after watching the Camp Twitch 2016 documentary and wanted to become involved to help raise awareness and education about Tourette’s.
This is my second year on the board of TANZ and am really looking forward to contributing to the organisation moving forward and letting those with Tourette’s know that it doesn’t have to stop them from achieving what ever they want to achieve.
Analise Twemlow – Youth Ambassador
In 2013, at age nine, Analise was diagnosed with Tourette Syndrome.
From very early on Analise decided she wanted to tell people why she did some of the things she did. She wanted people to understand her as well as other kids who had tics just like her.
What is Tourette Syndrome?
Tourette Syndrome (TS) is characterised by vocal and motor tics that range from mild to extreme in severity. Individuals can have singular tics, however both vocal and motor tics have to have been present for at least a year for an individual to be diagnosed with TS.
Why is it called Tourette Syndrome?
The syndrome is named after Georges Gilles de la Tourette, a French physician and neurologist. He was credited with defining the syndrome in 1885 after spending many years studying why certain people displayed sudden twitches and vocalisations.
What causes TS?
Tourette Syndrome (TS) is a genetic, neurological disorder that occurs during childhood. Not all children that inherit the TS gene display the traits that are associated with the disorder. Boys more commonly inherit the gene associated with TS. The ratio of girls vs. boys being diagnosed with TS is 1:4.
Is there a cure for Tourette’s?
No. At the moment the exact gene and neurons that cause TS are not known so there is no cure. Medication can in some cases help with suppressing the tics associated with TS.
Do the tics go away?
Remission can occur in adulthood. Some literature reports that 1/3 of adults have no tics; 1/3 still occasionally have mild tics and 1/3 will continue to have the same level of tics.
How many children in New Zealand are diagnosed with Tourette Syndrome?
The New Zealand Organisation for Rare Disorders endorses the Australian Tourette Syndrome Association statistics of 1:1000 children having TS. Not all of those with TS will be diagnosed with TS due to the mild nature of their symptoms.
Is Tourette’s a mental health disorder?
No, TS is not categorised as a mental health disorder. However many of the disorders that co-exist with TS like ADHD, OCD or depression are recognised mental health disorders and the psychological impact or issues associated with TS are treatable by mental health practitioners.
Does everyone who has TS swear?
No. Only a small percentage of those diagnosed with TS have coprolalia – an extreme vocal tic that causes the person to repeat inappropriate words.
What does ‘comorbid’ mean?
This term is used when a disease or disorder occurs simultaneously with another disease or disorder.
Will having TS shorten my lifespan?
Those diagnosed with TS can expect to live to normal life expectancy.
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