CAMP TWITCH 2020

It seemed to take forever for camp to roll around this year with all that has happened in the world. However, the wait was very much worth it for the young people, and the young at heart, who arrived at Forest Lakes Camp and Conference Centre in Otaki, on October 5 for Camp Twitch 2020.

There were plenty of fun activities including a visit to Weta Workshop, a close-fought game of laser tag, and even a visit by four real-life Tiki the T-Rex mascots!

Forest Lakes

Camp Twitch photos, courtesy of Steve Bone Photography

There are plenty more photos to view on our Camp Twitch 2020 Facebook page.

Sadly, more than 50 people missed out on coming to camp this year due to covid-19 restrictions. However, we are now planning for, and looking forward to, Camp Twitch 2021!

Thank you ever so much to our incredible volunteers who helped make Camp happen, particularly Anna Dewhurst, Raewyn McCracken, Robyn Martinovich and Steve Bone; and the parents who worked behind the scenes to make sure the kids got the most out of the experience – a big thank you to Dominique Baker, Rosy Moar and family, Julie Harrington, Lorene Cottam, Hayley Seath and Rochelle Shatford.

We were fortunate to have some generous business and individuals donate goodies for camp including CookieTime, Autism NZ, Victoria University, Jetts Gym Hamilton East, and many more.

Last but not least thank you to the Sutherland Self-Help Trust for its generous grant that made camp affordable for all families to attend.

LISTEN TO MADE IN NEW ZEALAND

With all major public events cancelled this year TANZ had to get inventive with how it would fundraise for 2020. This resulted in a fundraising song, Made in New Zealand, being written and performed by our very own youth ambassador Analise and produced and recorded by Tiki Taane. Check out www.itsanalise.com for links to download the song and to watch the video on our YouTube channel. Keep your eyes open for a special cameo appearance from Dr Ashley Bloomfield as well as TANZ’s very own mascot Tiki the T-Rex!

Every time Made in New Zealand is purchased, the Tourette’s Association receives a percentage of the purchase price and every time the video is viewed on YouTube or the song is streamed on Spotify we also receive monetisation, so please get streaming, get watching, get dancing and get singing!

BRING PEOPLE DANCING


Mitch James (left) and Mitch Lowe

The sudden death by suicide of a good friend spurred New Zealand musician Mitch James and his long-time friend and manager Mitch Lowe to take action to help people struggling with depression. Their idea was simple and incredibly successful – give people a reason to feel good, bring people dancing. So they did. Last summer their concept, Bring People Dancing, gave away over 100 tickets to music events throughout New Zealand to people who were nominated for the opportunity.

As Mitch Lowe explains, this year they are hoping to help at least 1,000 people feel hope by bringing them to music events. “Most people, no matter what age, love music. Through our company (Audiology Touring) we bring a whole range of musicians to New Zealand – anyone from Brian Adams to Flume – who appeal to just about anyone,” he says.

“Depression can affect anyone at any age and if we can help that person to meet their hero or to feel good again by enjoying good music and dancing then we’ll try our best to do that.” The Bring People Dancing’s ethos has now extended to a buddy system whereby someone can purchase a t-shirt for a nominated friend or family for $40 and not only will the nominated person get the t-shirt but they will also be buddied up with someone to talk to.

“Over the past year, talking to people who have attended the events or those who have nominated someone, the thing that is missing from people’s lives to someone to talk to. Someone to just call and say ‘how are you doing?’ “, explains Lowe. “So when someone is nominated for a buddy we’ll find someone to call them who has a similar interest – whether that’s sailing or gardening. With our contacts, being in the entertainment industry, we can reach out to a lot of people.”

People can nominate a friend or a family member to attend an event, or to buy a t-shirt as part of the buddy system, by registering on the website www.bringpeopledancing.co.nz

HAVE A MONSTER CONVERSATION

Illustrator Sian Winmill from Hamilton with her Monster Conversation well-being cards for young people.

Many of you will know, or may have seen, Sian Winmill, 18, on the Prime TV series ‘Living with Tourette’s’. Sian’s tics began to affect her life in her mid-teens*. Out of the blue one day her body and brain took on a life of their own. The change was dramatic and traumatic for both Sian and her family.

Almost overnight Sian was saying and doing actions that impacted not only her ability to attend school but to complete everyday tasks. For months Sian was not able to go to school and both she and her family struggled to come to grips with the life change. Sian is fortunate that not only does she have a sharp wit and a talent for art, she also has the support of a great family and at the time was supported by an amazing school and team at CAMHS.

While in Year 13 at St Patrick’s School, Cambridge last year Sian, with support from her design teacher, began a project called Monster Conversations – a well-being toolkit for young people – that she illustrated and is now selling with help from her former school. The bright, fun conversation cards are a tool to help young people communicate their feelings using a friendly monster image who helps them to tackle what can sometimes be scary emotions to talk about. To find out more about the Monster Conversations project please watch this video.

To order your own set for just $23 please contact jessicap@stpeters.school.nz or himonsterconversations@gmail.com.

Monster Conversations is also on Instagram, @monster_conversations and if you would like to use the illustrator, please contact Sian at ian.rhian@hotmail.com or @pigeon_medal on Instagram.

*While Tourette Syndrome is generally diagnosed in childhood, following a year of both vocal and motor tics appearing concurrently, some teens and adults do experience a sudden onset of uncontrollable tics. However with some tics being so mild, they may never have had any significant impact on the individual’s life when they were younger – repetitive sneezing or coughing, blinking or twirling one’s hair are forms of tics.

CHANGES TO THE BOARD

On September 20th, 2020 the Association held its annual general meeting at Community House. It had earlier accepted the resignation of Tayla Reece from the role as chairperson and elected former secretary Chad Blair to that role. The board also voted in favour of accepting Tara Robinson’s nomination to stand as a board member. Tara also volunteered to take on the role of secretary. Andy Norton remains on the board as treasurer, alongside board members Hayley Seath and Lauren Smith.

Chad Blair Tara Robinson

NEWS

The arrival of Covid19 not only affected our ability to fundraise this year, it also saw enquiries to the Association and our membership numbers shoot up. On average the Association has a rate of four new memberships per month – in June that skyrocketed to 24, with the following months seeing an increase of 10-16 new members per month. A large number of these new members are young people aged 14+ which is also unusual, as the average age for new members signing up is eight to 10 years of age.

Over the weekend before Camp Twitch 2020 the Association held a youth hui for young people interested in becoming advocates and mentors for others living with Tourette Syndrome. Shannan and Abbie from Ara Taiohi held a session on how to communicate with young people and there was robust discussion about how the young people felt about Tourette Syndrome being recognised as a disability.

In 2018 our executive director Robyn Twemlow met with the then Minister of Health, Dr David Clarke and the Associate Minister of Health Julie Ann Genter to propose that TS be recognised as a disability however that ever eventuated. In 2021 Robyn Twemlow hopes to get a chance to sit down again with Andrew Little, the newly appointed Minister of Health.

MERCH!

After Camp we had several enquires about acquiring TANZ branded hoodies. One of our members, Kirsty, volunteered to organise the ordering, production, payment and delivery of these items. I’m sure she can attest – it’s quite a bit of work! Thanks Kirsty!

This did however prompt us to try and make the process a little easier in future, and set up a permanent Merchandise store for the Association. Please check out our merch storehere on Redbubble. A percentage of all sales goes to the Association so please share the store with your friends and family.

At present we only have some clothing items in the store – but we can add many other products in future, such as mugs, fridge magnets, tote bags, phone cases and lots more. Have a look around other stores on Redbubble and let us know if there is a product you’d like to see added.

Of course, it would be really good if our merch sold outside of our members too, for the benefit of the Association. If you have any product ideas, would like to donate some artwork, or would even like your favourite tic immortalised on a t-shirt – all contributions gratefully received!

MANY THANKS TO…

Catherine McHaffie, from Rolleston, who organised a raffle and fundraising Zumba class for the Association in September. There was a lot of nail biting waiting to see if the fundraising event was going to actually be held with Covid restrictions being in place. Thankfully the event was allowed to proceed, albeit with a capacity limited to 70. All of those who attended had a fabulous time and the energy in the room was magic.
Lorene Cottam, Lauren Smith and Hayley Seath who helped with organising the inaugural TANZ quiz night fundraiser in Hamilton. The girls knocked it out of the park with their first ever quiz night, selling out tables almost immediately and raising nearly $4k. Everyone had such a great time that five teams have already booked themselves in for a repeat event in 2021!
And great thanks to Andy Norton who set himself a challenge to ride for 24 hours on a stationary bike at home to raise awareness for Tourette Syndrome and fundraise at the same time. Andy nearly lasted the whole 24 hours and in the process raised over $3k.