Robyn Twemlow – Founder and Executive Director (voluntary)

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.

 

Jaz Burke – national youth coordinator (voluntary)

My passion for working with young people was ignited by working at a camp for kids with special needs in the USA.

I studied English and Cinema at university while doing voluntary and paid youth work though the church.

I currently am the Operations Manager of the Imagination Station, where I manage a team of staff and volunteers, and play with LEGO!

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.

Ethan Downey-Parish – Youth Ambassador

Hey guys, I’m Ethan. I’m 18 years old and I live in Auckland. I’m a leader at a youth group known as ‘HWK’. I’m currently studying a Diploma in Audio Engineering and then onwards to a Bachelor of Recording Arts. I also write music with a good friend of mine as music is a big passion of mine.