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New Zealand Williams Syndrome
Winter 2018 Newsletter

From the Editor

Hi <<First Name>>,

Winter has definitely arrived with low temperatures, rain, snow and ice affecting many parts of the country. But as I look out my window, the cherry blossom tree is "blossoming" and the red rhodedendrum is also in bloom, so spring is just around the corner. I know I always mention skiing at this time, we haven't been yet but plan to maybe late August, exciting! Remember that Disabled Snowsports offer good discounts for members, plus helper - so join up and get the benefits. Even if its just to have access to free volunteers to enable you to ski by yourselves or for half price lessons, it's well worth the small joining fee.

There is further information on the camp at Living Springs, Christchurch. Great news - due to the extremely successful golf tournament the camp has been extended to Monday. So the dates now are from Friday, 25 January to lunchtime Monday, 28 January 2019. Plenty of time to relax and enjoy our kids! So please send in the attached camp registration form as soon as possible to enable further planning to be done.

Our sincere condolences are extended to Glenda and Lester Brewer and family from Motueka at the recent unexpected passing of Cole at only 23 years old. Our thoughts and prayers are with you at this difficult time. 

Fundraising to date for the camp is coming along well, if you haven't already done so, please organise some fundraising in your area. Every little bit helps. Trish has written about raising over $10,000 at the recent Golf Tournament in Christchurch. What a success!

I have also included a list of upcoming seminars at Disability Connect in Auckland. Please check your local areas/Disability Information Service for seminars in your part of the country.

Also, we appear in the latest IHC mag "Community Moves" - with Kaleb Hohneck on the front page, Finn Wickham, Regan Todd and Lania Vaireka in the article about Denise Bray and the WS Camps - and the generous funding by IHC towards our camps.

Mao, Tatiana's dad, has written a piece on Tatiana's fantastic accomplishment in being selected for her school Kapa Haka group, and their achievement at the Regional Competition. Everybody is so proud and Tatiana is a real inspiration to us all. Congratulations!

Happy reading, 

Sandra Paterson - Editor
19 Skibo St, Kew, Dunedin
Phone: (03) 4879 056

Group photo - 2017 Rotorua Camp

The Williams Syndrome Golf Tournament

The Williams Syndrome Golf Tournament held in Christchurch in May was a great fundraiser for our national camp raising $10,509. We were blessed with a sunny day and players were very generous buying raffles and auction items. A huge thank you to all our volunteers and to the businesses, family and friends who gave us donations, especially our major sponsor, TradeMark Paving. 

Bob Hastie (9 yrs WS) and some of his family of volunteers.

George Stillwell entered a team and is pictured here with Jessica McClintock (21 yrs WS) and Georgia Strangman (23 yrs WS)  who came along to thank everyone for their support. We also had Lucy Easton (4yrs WS) greeting players as they came in. Her mum Charlotte was an awesome volunteer on the day and Lucy’s grandparents donated a generous prize for our auction.

Membership Renewals for the year to 30 September 2018.

You can renew your membership online here.

Tatiana's Kapa haka group

Tatiana has always had a passion for Kapa Haka and loves watching the competitions on Maori TV. Last year the school Kapa Haka group, Te Tira Whakaau sent out a call for those wanting to join the group as they would be entering a team into the Regional Kapa Haka Competitions. There were many practices over a number of weekends and some very late nights. 

Tatiana kept up with the practices and was very excited when they announced the team. The performance required some very fast paced movements across the stage so we were unsure if Tatiana would make in into the team. 

Tatiana did make it into the team and were so excited for the big day. 

The group were very accommodating and allowed her to perform and move to areas out of the way when there were major movements across the stage. The judges were asked to keep in mind her restricted movements but the group included her so well that the judges could not pick her out.

Tatiana 3rd row performing at the Regional Kapa Haka competition in Lower Hutt last year with her group.
The group came second in the competition and won a place at the National Competition in Palmerston North this year. We travelled to Palmerston North to support the group and Tatiana practiced with them leading up to the competition.

In September Tatiana will travel to Japan with the group to perform in Tokyo, Osaka and Minoh. She is practicing for that trip and looking forward to performing in Japan.
Tatiana 3rd row, 4th from left with her Kapa Haka Group after their performance.
2019 New Zealand Williams Syndrome Camp

Living Springs Christchurch: Friday 25th to Monday 28th January
Great news - due to the extremely successful golf tournament the camp has been extended to Monday.

So the dates now are from:
Friday, 25 January to lunchtime to Monday, 28 January 2019.
The camp will be in Christchurch at the Living Springs in Christchurch. 

There is an indoor swimming pool, a go cart thing, mini golf, trampolines, tennis courts, bush walks, kids playground, rope swings and more onsite.

Living Springs is at least a 45 minute drive from Christchurch Airport. There will be vans available for transport from the airport to camp so please include your flight details on your registration form, or let me know when you have booked your flights.

Please ensure that you arrive at Christchurch airport before midday or we may not be able to provide you with transport to camp. Those driving to camp can arrive anytime from 10am on Friday, 25th of January.

Download the camp registration form
Site and grounds map. Click on the map to view a larger map of the grounds.
Click on the map above to see directions from Christchurch Airport to the Living Springs Camp ground.
IHC Community Moves
Kaleb Hohneck has fun in an inflatable soccer ball at the New Zealand Williams Syndrome Association’s camp in Rotorua.
Denise Bray's story (see story below) featured in the IHC Community Moves magazine.

The other mothers knew what was really going on

Doctors told Denise Bray that her 18-month-old daughter was vomiting because she had a virus. But it was the mothers of other children with Williams syndrome who told her what was really going on.

Denise says it was the family’s first time at a New Zealand Williams Syndrome Association family camp. “My daughter was 18 months. She was just on solids and she was vomiting all the time, and about three mothers said: ‘She’ll have celiac disease – get her tested’.”

So Denise did get her tested and the doctors confirmed it. “They said she had severe allergies and she was probably allergic to several things, but she definitely had celiac disease.”

No one understands what it’s like to raise a child with an intellectual disability better than other families struggling with the same issues. Intellectual disabilities, such as Williams syndrome, aren’t always well understood at the local medical centre and it’s often other parents who can throw the lifebelt at the right time.

“Because it’s quite a rare condition, the doctors in New Zealand often don’t know much in terms of day-to-day support. You get it from other parents,” Denise says. “Sometimes other parents can give you that invaluable advice as to what they have done.”

The IHC Foundation makes it a priority to fund organisations that support families. Top of its list of five priorities for funding are projects that build family networks and support access to information. The Foundation has contributed funds towards the New Zealand Williams Syndrome Association’s biennial conferences since 2012. The conferences alternate between the South Island and North Island to make it as easy as possible for families to attend. As many as 30 families come to the camps to participate in educational and support forums and to hear visiting experts provide updates on the latest research, treatment and support strategies. The Association has between 80 and 90 members.

“Conferences for parents and caregivers and people with disabilities can make a huge impact through the sharing of information, resources, strategies and experiences,” says IHC Foundation Chair Paul Baines.

The New Zealand Williams Syndrome Association’s most recent conference, in Rotorua last year, featured Dr Melanie Porter, a senior clinical neuropsychologist at the Centre for Atypical Neurodevelopment at Macquarie University in Sydney. She is a specialist in Williams syndrome, Down syndrome and autism – and her research now includes New Zealanders as well.

The Association invited American developmental psychologist and author Dr Karen Levine to its conference in 2015. She camped on site and spoke to families about how to coach children out of the phobias and anxieties they often experience – how to deal with the noise of thunder or even the lawnmower.
Download the full magazine here
Disability Connect

Upcoming Seminars

Disability Connect regularly run six different seminars throughout the year on the following topics:

Individualised Funding
Living Options
Transition out of school
Education Legal Issues
Planning for Adulthood
Work and Income supports in Disability

Click on the links for more information about seminar content, dates, venues, etc. There are daytime or evening options for most seminars.

They also run seminars on additional topics throughout the year.  This includes:

Sexuality Education

Click here to download a PDF of all the seminars

Friends of Williams Syndrome

Would you like to become a friend' of Williams Syndrome?

The Aims for the "Friends" of Williams Syndrome

  • To support the general work of the Williams Syndrome Association
  • To support fundraising efforts of the Williams Syndrome Association

Friends of Williams Syndrome will receive:

  • A quarterly Williams Syndrome newsletter . Williams Syndrome pen & bag

Annual subscription: $15 per person, $20 per couple / family

If you are interested in being a "friend" please contact Denise Bray at or 09 523 4522

Download the subscription form
Copyright © 2018 New Zealand WIlliams Syndrome Association, All rights reserved.

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