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November  2018
Prader-Willi Syndrome Association NZ

Diary Dates

IPWSO Conference Cuba 

Nov 13th - 17th 2019

Bits and Pieces

'Pen friend' / Chat group for adults with PWS

PWS Downunder Online is a private 'closed' group for people with PWS aged 16+ who are known to the AUS or NZ PWSA databases. Just click here for details.

PWSA (NZ) Yahoo and Facebook groups

Our groups are online closed forums to discuss anything related to PWS: ask questions, discuss issues and share experiences. Click here to join our parent Facebook group. Click here to join our Facebook group for all. To check your yahoo membership or join, go to yahoo groups.

Give a Little Website

We have 2 fundraising pages. One is fundraising for PWS research and the other is to support the work of the PWSA(NZ). You might like to consider linking your page or event to one of these pages if you are involved in any fundraising. 

My Care Website
My Care is a carer matching service. If you're looking for carers or looking for work, My Care is a good place to start.

New Regional or National Services

Many of us already benefit from national organisations such as Riding for the Disabled, Special Olympics, StarJam and People First. Any new services we hear of are listed here:

Dayspring Art Classes - NEW LYNN, AUCKLAND

Creative art classes suitable for all levels.  All paints and
 canvas paper will be provided. Mondays 10am–1pm, Dayspring Trust, 2 Seabrook Avenue. Cost: $80 per term. Phone Karen 09 827 6321 to register.

Adapted Gymnastics - AUCKLAND

Gym City Papatoetoe Disabled programmes may run on the following days: Preschool classes Mon 1-2pm $84 per term and Gymfun (5-12year olds) Weds 3.30-4.30pm, $18 per term. To enquire, contact Gymcity Manager Rowena 09 279 9400.

Howick Gym. A disability class may run on Mondays 10.45-11.30am for children aged 2+. If you are interested, please email to find out more: 


Able Pet Care is a registered charity and social enterprise providing pet care services.

Dog walking services enable someone with a disability to grow as a person, gain a greater sense of self-esteem, responsibility and quality of life through meaningful employment.

Phone 0508 ENABLE, 



EAGALA stands for Equine Assisted Growth and Learning Association. 

The Eagala Model is a distinct experience-based, team-approach framework designed to empower clients to analyse their situations, make connections, and find their own solutions through personal and physical experiences. Find a centre near you using the search feature on the Eagala website.

Other Groups and Supports

Disability Connect

LOTS of information on activities, holiday programmes, playgroups and after-school care are listed here, as well as links to service providers. These are mainly in the Auckland area.They also run support groups for families.

Parent to Parent

Parent to Parent facilitate parent support groups in each area and new groups are often being set up. These groups often meet on a monthly basis. Find your local Parent to Parent office for local support groups and more information about activities in your area.

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General News Updates


4th Asia Pacific Conference 2018

The 4th Asia-Pacific PWS Conference was held in Brisbane, from October 18th - 20th. Several of our members were able to attend and hopefully enjoyed the opportunity to hear more about PWS research, support and management and to discuss some of the issues. All videos of the conference presentations can now be viewed on our YouTube page. These include a presentation by our Chairperson, Karen O'Reilly, who honestly shares her journey with PWS. If you are keen to attend the next PWS conference, IPWSO are holding the 10th international conference in Cuba next year - click here for conference details.

Our Association News

Regional Family Days 
We are hoping to announce dates of upcoming Family Days or Christmas themed 'get togethers' soon. These are likely to be held in Auckland, Christchurch and Wellington and will provide a fantastic opportunity to catch up with other families. Please get in touch with us or your regional coordinator if you have any particular suggestions for venues / locations.

New Website
Our new website has been live since the end of September and we hope you've had a chance to check it out:
The new Medical Information section contains a useful, new page for emergency situations as well as a new Medical A-Z page. We also hope that the addition of a New Diagnosis section will be useful for families with newly diagnosed children. The revised Support and Management section contains lots of new information and downloadable resources on topics such as diet, behaviour and puberty, and from the early years through to adulthood. In the News and Events section you can catch up on news posts, for example, click here to read here about our 2018 Family Camp. Ordering resources is also made much easier now with the availability of order forms for our library resources, our publications and our fundraising merchandise.
Please let us know if any photos have been used that you would like removed.

Ordering Teacher Packs for 2019

teacher pack FRONT (cropped 2)If your child's teacher for next year does not have a copy, or if your child is starting at a new school or centre, you may wish to order a Teacher Pack. These are free of charge and can be ordered here or by emailing:  
Packs ordered now will be posted by the end of November.
Packs contain an example of a pupil profile template which can be personalised. This editable template can be downloaded from the additional resources on our school support page. A downloadable version of our Teacher Pack is also available on our website.

Transition Resources

If your son or daughter is transitioning from school this year or in a few years time, these 'What's Next?' regional transition options resources can be useful:
Wellington region: download here
Central:  Whanganui, Manawatu, Tararua, Horowhenua and Kāpiti: download here
Waikato region: download here
Some other helpful transition resources can be found below:
IDEA Services transition brochure: download here
CCS Disability transition services: weblink here
Spectrum Care transition brochure: download here
Hohepa Auckland transition service: website here

A night for rock 'n' roll...

spectrum care rocknroll danceYou may recognise these ladies? They all have PWS and live together with support from Spectrum Care. They look like they had a great time at this "Rock n Roll it out" event! Spectrum Care held this successful, annual event at the Ellerslie Event Centre.

'I Choose' starts December 1st

A reminder that Carer Support is being replaced from 1st December. No more blue Carer Support forms to complete! 
I Choose is intended to be a more flexible type of respite and you are encouraged to think outside for box in how you choose to use it! More information can be found on the MOH website.

Regional Events / Workshops

Disability Action Plan Workshops 2019-2022 - NATIONAL

The Office for Disability Issues (MSD) invite you to participate in the Disability Action Plan feedback workshops. These workshops, which build on the regional meetings held by the Minister for Disability Issues, Hon Carmel Sepuloni, earlier in 2018, are the first of a series to be held around the country.

Public Consultation Workshops Agenda (1 hr 30 min approx)

Introductory presentation: The Disability Action Plan and how it fits with the UN Convention for the Rights of Persons with Disabilities (UNCRPD) and the Disability Strategy.

Comments on the 2014-2018 Disability Action Plan, incomplete actions to consider for continuation in the new Action Plan, and the six key issues that have already been identified by the International Monitoring Mechanism (IMM). Many actions will be identified and some prioritisation is likely to be required.


Opportunity to hear from people on their priorities for actions.

Small groups – brainstorm and prioritise their top 5 actions.

Report back from small groups. Voting – participants vote for the workshops top priorities. Click for more information.

RSVP: with subject: DAP Workshop

Auckland - Nov 20th - 2.30pm - 4pm - CCS Disability Royal Oak, Kauri Room, 14 Erson Avenue, Royal Oak

Auckland - Nov 20th - 6.30pm - 8pm - Disability Connect, 3B Olive Road, Penrose

Hawkes Bay - Nov 23rd - 9.30am - 11am - Ellwood Function Centre, 15 Otene Rd, Waipatu, Hastings

Palmerston North - tbc

Wellington - Nov 14th - 2.30pm - 4pm - Aurora Centre, level 1, Meeting room, Kakapo, 56 The Terrace, CBD

Wellington - Nov 14th - 6.30pm - 8pm - CQ Hotel, Cuba Room, 213, 223 Cuba Street, Te Aro

Christchurch - Nov 26th - 2.30pm - 4pm - Papanui RSA, 55 Bellvue Avenue, Papanui

Dunedin - Nov 29th - 11am - 12.30pm - Dunedin Community House, Alexander McMillan Room, 301 Moray Place

Community Participation Workshop Series - NATIONAL

These NZDSN workshops may be of interest to service providers. A facilitated approach to building inclusive community is at the centre of Enabling Good Lives.  This workshop series will assist participants to engage with approaches and practices that move us from a focus on "services" to mainstream community that supports personalised participation in everyday things in everyday places. The workshops will be presented by the team at Interactionz and will introduce a Community Mentoring Framework.

Wellington - November 28th - Meetings on The Terrace
Christchurch - November 30th - Sudima Christchurch Airport
Click here to register.

Sibling Support 2018 - NATIONAL

SibSupportNZ by Parent 2 Parent allows 8-18 year olds who have a sibling with a disability to establish support networks by making friends with siblings in similar situations.
Northland Sibcamp March 29th - 31st 2019
Auckland SibCamp March 1st - 3rd 2019
Central Lakes &CBOP SibCamp  Nov 16th - 18th 2018
Wellington SibCamp Nov 30th - Dec 2nd 2018
Manawatu SibCamp March 15th - 17th 2019
Phone 0508 236 236 or email for more information on SibShops or SibCamps or register here.

Disability Connect Workshops 2018 - AUCKLAND

Care Matters Workshops 2018 - NATIONAL

Care Matters is a carer learning and well-being resource by carers, for carers. The website contains useful online resources, a list of upcoming workshops around the country and a link to the MyCare carer matching service. The workshops are highly recommended by Cindy, who has worked with facilitators in her previous role for SAMS.
Banks Peninsula, Little River Nov 21st 2018, 9.30 -2.30pm - Explore - Learn - Connect
Central Otago, Cromwell Nov 19th 2018 9.30 - 2.30pm - 
Explore - Learn - Connect
Phone 0508 726 769 or register here
Tel: +64 27 673 1007
        Freephone: 0800 4 PWS HELP

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Prader-Willi Syndrome Association New Zealand Inc.
PO Box 258
North Auckland, Auckland 0944
New Zealand

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