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New Zealand Williams Syndrome November 2017 Newsletter

From the Editor

Hi <<First Name>>,

Firstly, I must apologise for the delay in getting this latest newsletter out to you. My old computer "packed up" and so I purchased a new second-hand one and I'm still learning how to use it as it's programmes are different!

What's that saying - A good tradesman never blames his tools!! Anyway, with the help of Mao (Tatiana's dad) we are back in business!

Unfortunately we sadly learned of the loss of Peter McPherson last week. He was loved by all who knew him and was given a fitting farewell on Friday. A tribute to Pete is included.

There is quite a bit of news in this edition; from Sophie Glasgow winning awards for her 6th Form Business Studies Venture to groups raising money for the Assn as discussed at our last AGM, including Samuel Taylor's Bootcamp, as well as a welcome to our new Dunedin family.

There are also two requests for NZ WS families to take part in research studies – one on Pain in WS people and the other on Siblings of WS children. These are from the Netherlands and Edinburgh respectively.

With having had overseas speakers at our camps and also our members attending overseas conferences New Zealand is now being included in research studies – which is great. Both studies are to be done on line but I am sure if you really want to participate then we could contact them and arrange for papers to be sent via post if that's more suitable.

I would like to wish all those going to Wellington for the National Special Olympics all the best and hope you have a great time!

This year has flown by so quickly, and with only about 6 weeks till Christmas I would like to wish you all the best for the Festive Season and hope that the next newsletter will be received in a more timely manner!

Regards
Sandra Paterson - Editor
19 Skibo St, Kew, Dunedin
Phone: (03) 4879 056
Email: smpat@xtra.co.nz
A Tribute to Pete
It is with deep sadness that we mourn the loss of Peter McPherson on Tuesday, 14 November. He was 53 years old. Our heartfelt sympathy is extended to Pete's family as his passing will leave a huge gap in their lives as it will for our Williams' families.

Peter touched so many lives with his friendly endearing nature, his wonderful sense of humour and acceptance and sympathy so unconditionally given. He also had a keen enthusiasm and interest in music and sport too. We will all miss Peter's happy face and jokes. He was always the "life and soul..."
Pete was a very keen supporter of the North Shore Rugby Football Club. A member of the club spoke at Pete's funeral and stressed how Peter wasn't so much disabled as Gifted! And the Vicar also stated that with Pete living in Devonport for the last ten years he was a Gift to the village. The very numbers who came to the funeral were a testament to these talents he had. The Rugby Club performed a very moving Haka afterwards.

By Kit Crawford
Pete, A great role model
Pete and Henry at Dunedin WS camp
Peter touched all of our hearts in some way and was a great role model to many of our younger family members. Many a good joke or story was shared with us all. When we looked at Peter he gave us all hope of a person who lived a good life, was caring and had time for everyone. Peter would often ring on a Sunday and would love to talk to everyone, especially around camp time when these phone calls would occur more often because he was so excited to see everyone. He had travelled the world and lived independently for much of his life. Everybody knew Peter! He will be hugely missed and know that his time in Heaven will be as full as his time on earth.

Our Williams' Got Talent Shows always had to have Peter in it as some of these photos show. He knew the words to many songs and loved to sing at the top of his voice. He was also especially proud of his Maori heritage and would actively participate in the Haka!

By Christina Stilwell (via Facebook)

AUCKLAND PICNIC

Sunday 3rd December from 1pm

The Auckland Group will be holding their annual family picnic on Sunday 3rd December at Lloyd Elsmore Park, Pakuranga - Pakuranga Road & Cascades Road Meet at the hockey & rugby fields – look for the WS Flag! Bring togs if you want to swim. Adults $5, Children are free.

If it rains contact: Tasha 021 029 31979 Come along and enjoy a relaxed get-together.

For more information please contact:
Denise Bray - (09) 523 4522 or email denise.bray@xtra.co.nz
Tasha van Aardt – (09) 277 2521 or email tashavanaardt@gmail.com


Click here for directions to the park

Auckland Marathon

Michelle Goulbourne, Iris and Denise walked the 5km Heart Foundation Walk which is part of the Auckland Marathon on 24 October. Everybody had a great time, as can be seen by Michelle's and Iris' smiles!
Michelle and Iris

Invitation to Complete Pain Questionnaire Williams Syndrome

Research title: Pain in Williams, Prader-Willi, and Fragile X syndromes
Researchers at the VU University examine pain characteristics (the presence of painful conditions, pain perception, pain behaviour, and the ability to feel physical sensations) of people with Williams syndrome, Prader-Willi syndrome, and Fragile X syndrome. In this study, participants are tested, file information is requested, and questionnaires are completed.

We distribute the Pain Questionnaire in various Dutch and English countries. The purpose of the questionnaire is to gather experiences and knowledge about pain from people directly involved in adults with Williams, Prader-Willi, and Fragile X syndromes (such as family and Personal Support Workers). Sharing this information provides valuable insight and practical tools for dealing with pain. The person completing the questionnaire does not participate in the rest of the study.

The questionnaire will be completed online. Data will be collected anonymously. In other words, no personal information such as name and date of birth will be required.

The reason that we approach you is the request to complete the Pain Questionnaire. This will take on average 30 minutes and is best completed within one single session.

Click on the link to go to the questionnaire: Read more here

Study Of Siblings Of WS Children

Christina received an email from Dr. Katie Cebula about a study for families who have a child with Williams syndrome AND a ‘typically developing’ sibling (both aged 4 –16 years). Christina hopes that many of our NZ WS families will take part.

Parents will be invited to complete a questionnaire pack. This contains questions about your background, your family, your feelings (e.g. positive feelings, anxiety), your child with Williams syndrome and their sibling (e.g. behaviour, social and emotional development). In families with two parents, both will be asked to fill in a questionnaire pack (although it is fine if only one of you can participate). Packs should take about 30 minutes to complete.

Click here to learn more and take part in the survey.

Young entrepreneur of the year award winner
- Sophie Glasgow

Sophie Glasgow winner of MOE Young Entrepeneur of the Year Award
In the last newsletter there was an article on the 6th Form Business Studies Venture – KIWI CARDS - by Sophie Glasgow and her school team.

Huge congratulations must go to Sophie and team for their outstanding achievements at recent competitions and awards. Sophie won the Ministry of Education's Young Entrepreneur of the Year Award at the Rotorua Westpac Business Excellence Awards.

The interviewing process involved an application letter that was endorsed by her school (Western Heights High School) after this she was moved onto the second round where she had to give a 10 minute presentation on their business (eNZidea) to a panel from the Ministry of Education. At the awards night on the 7th of October she was announced as the winner! She received a trophy and a certificate.

Her team has also recently come second in their Regional Dragons' Den Competition, and third in their Regional YES Competition!
Sophie & Team came 3rd in the Regional YES Awards
Sophie & Team came 2nd in the Regional Dragons' Den Competition

Dunedin Get-together

Thanks to Gordon Whyte (Todd's dad) for organising our get-together at their house. It's been a while since we all met, but at the annual Special Rigs for Special Kids we met our new WS family and decided it would be nice for them to meet all the WS families down here.

Unfortunately Dallas Jackson and family couldn't attend but they were at Special Rigs. The new family is Kelly and Nathan Mithchell and their twins Max (WS) and Morgan who are 4 years old. We had a lovely sunny day at the Whytes' and enjoyed being able to sit outside and catch up. We intend to organise these get-togethers on a more regular basis.
Sun's a bit bright! - Max, Courtney, Todd and Sam
Left Photo: Anita, Morgan, Kelly & Courtney  Right Photo: Anita, Glennys, Kelly and Morgan
Gordon, Martin, Nathan and Kelly
SAMUEL TAYLOR'S BOOTCAMP

We met Samuel and family at the very first camp in Nelson back in 1997. We have a video of my Sam and Sam Taylor up on stage both trying to use the microphone and stealing the show at the WS concert! At that time the Taylors lived in Motueka, we lost contact, but now they live in Christchurch. We hope to see them at our next WS camp in 2019. Huge thanks to Samuel and family for donating the Bootcamp proceeds to the NZ WS Assn. by Sandra Paterson.
Samuel's personal trainer, Reece McCaffrey from Bodyfix NZ Ltd in Christchurch, said he was so proud of Sam, who he said is growing into a great young man. (I have copied Reece's comments from his facebook page.) Sam has lost over 20kgs since February.

This is a real credit to the work Sam has put into his journey and the team at Bodyfix Gym wanted to give back to Sam be setting up a fundraiser to raise funds for the Williams Syndrome Association.
Massive turnout for Sam's Bootcamp - Reece & Sam at front.
The changes in Sam have been huge! His motivation and ability to do everyday tasks and open his eyes to new things has been amazing. Sam is now ready and willing to tackle anything, which led Reece to the next step in Sam's journey. Reece convinced Sam to run a Bootcamp session with the help of the Recreate Personal Training team.
He was in charge and wanted everyone to do his favourite exercises. He even picked out a playlist with all his favourite tunes. So, on Friday 27 October at Bodyfix NZ, Christchurch, Sam's Bootcamp happened. A $10 donation was made by each participant and proceeds went to the WS Association to help benefit others like Sam and give back to people who are in need. Sam's Bootcamp was a huge success. Reece thanked all the people who came to the Bootcamp to support Sam and advised they raised over $1,000 for the NZ Williams Syndrome Association.
Left Photo: Bootcamp Activities Right Photo: Sam Taylor running his Bootcamp
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