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

Tara Robinson

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.

Shelley Reynolds – Board Member

New to the board in 2022, I am excited to be part of a dynamic board that moves the Tourette’s Association in a positive direction.

My link to the Tourettes world is through my son who was diagnosed at age 4.  Today, we learn to navigate the world as best we can, making sure our son is given every opportunity to excel at anything he wants to do.

Natalie Julian

Natalie Julian – Board Member

Hi I’m Natalie.  I am a lawyer from Wellington and for years I have admired the work Robyn and the team have been doing! I think it’s amazing how much visibility and awareness Tourette’s New Zealand has created and I am excited by the opportunity to help in any way possible.

Natalie Julian

Diane Harvey – Board Member

TBC

Hayley Seath

Hayley Seath – Admin

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, arming 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, educating our communities about the difficulties people with TS face and supporting others who are also on a similar journey.

Lauren Smith, Registered Psychologist – Advisory Board

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.

Ethan Marshall – Advisory Board

TBC

FAQS

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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