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New Zealand Williams Syndrome
Autumn 2018 Newsletter

From the Editor

Hi <<First Name>>,

Apologies once again for the delay in producing the newsletter. As I get older time seems to fly by faster than ever - it's nearly the middle of April!!

Information on our next camp to be held at Living Springs, Christchurch, is also included. It looks like a great venue and we are really looking forward to it. I will send further information as it comes to hand. Currently there has been $2,086.64 raised towards camp. See overleaf for funding ideas for your region - every little bit helps.

We have just returned from 10 days in Melbourne, Australia, where we attended Sam's cousin's wedding, and Charlotte was a bridesmaid. It was a very grand affair, and Sam looked quite the part in his suit jacket, shirt and tie! We all had a great time and later we spent a few days travelling the Great Ocean Road, truly a wonderful trip. Sam was a bit out of sorts when the rest of the family all left to go home after the wedding, but once we landed in Dunedin and he saw his grandparents, he was back to his normal self - thank goodness!

Sam on the Great Ocean Rd, Victoria, Australia and at the wedding.

I would like to mention the great work that Diane Moody and Shane have done around Family Funded Care. They have won their case in the Appeal Court to increase the hours Diane is paid to look after Shane, but they only gave them 37 hpw so Diane is appealing again to have it increased to 40 hpw. The Judge was quite scathing of the Ministry of Health saying the process of applying for FFC was too complicated and the needs assessment being impenetrable.

I have attached links for people to go to to follow the story. Most of the media have picked up on this and Diane and Shane have appeared on TV, Radio and the newspaper. Thank you Diane for fighting for a fair deal.

We warmly welcome our new families to the Association - the Timoti and Daniels families.

Sandra Paterson - Editor
19 Skibo St, Kew, Dunedin
Phone: (03) 4879 056
Membership Renewals for the year to 30 September 2018.

You can renew your membership online here.


We would like to welcome two new families to the Association

The Timoti Whanau from HuntlyJamie and Puke have four children, girls Maioha and TeAo, and boys Haruru and Manaakiao who has WS and is aged 4.
The Daniels Family from Auckland - Charlene has 5 children - Tyler, twins Emma and Chloe, and lyr old twins Luca and Bella (Bella has WS).
Our sincere condolences go to the Hilliard family of Marlborough. Doug - Pam's son, Michael's dad, passed away in December after a short battle with cancer. Our thoughts are with you all at this difficult time.

Also, condolences to the Stilwell family. Tony's mother, Henry's grandmother, passed away recently. Jennifer attended a few of our camps and was keen to be involved and very helpful to Tony and Christina. Our thoughts are with you all.
Family Funded Care
Congratulations to Diane and Shane winning their Appeal against the Ministry of Health regarding allocation of hours for Family Funded Care. 

Click here to read the full judgement.
Shane and Diane
Auckland mum's appeal for pay for care of disabled son highlights cracks in system - Disability Rights Commissioner

Click here to listen to the RadioNZ interview

A humiliating and impenetrable system

UN to scrutinise NZ’s disability policy
2019 New Zealand Williams Syndrome Camp

Living Springs Christchurch: Friday 25th to Sunday 27th January
The next 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.
Presentation at camp

Presenter: Jacqui White

Enabling Good Lives

Enabling Good Lives (EGL) is a new approach to supporting disabled people that offers greater choice and control over the supports they receive, so that they can plan for the lives they want.
Fundraising for camp

It was voted at the last AGM to raise money towards camp - either individually or as a region - rather than pay substantially more to attend camp. Please think of something you or your region can do to raise funds - every little bit helps!

So far, this is what has been raised. Well done to everybody for their great efforts.

Auckland Marathon: $40
Sausage Sizzle - Stilwells: $300
Sale of books - Jo Webb: $150
Gym Fundraiser - Sam Taylor: $1300
Young Enterprise Scheme - Sophie Glasgow: $296.64

Trish Hastie has organised a Golf Tournament at the Templeton Golf Course, Christchurch on Sunday, 27 May.

Denise Bray has organised a Sausage Sizzle at The Warehouse, Botony Downs on Saturday, 26 May, and again on Sunday, 24 June.

Contact Trish Hastie on 027 634 9085 or email
Friends of Williams Syndrome

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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
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