NEWS & UPDATES
March update – new projects and celebrating the upcoming retirement of a staff member
31 Mar 2025
Kia ora Melanie,
I hope all is well for you and your whānau.
It has been a month of highs (with the launch of a fantastic new toolkit and a great new section on our website) and lows (due to the upcoming retirement of a staff member) at the Cerebral Palsy Society. You can read all about what’s been going on in our newsletter below.
Cerebral Palsy – Hōkai Nukurangi: The Early Years Kete
Earlier this month we were very excited to launch Cerebral Palsy – Hōkai Nukurangi: The Early Years Kete. Have you had a chance to take a look?
It’s the first in a series of toolkits that provides information about the various stages and phases of living life with CP.
The Early Years Kete is a toolkit for anyone who has had a new or recent connection with Cerebral Palsy and wants to know more about it in the early years of a child’s life.
We’re really excited that we’ve been able to produce this in English and te reo Māori. We’re working on Samoan and Tongan translations at the moment.
On our website you’ll find downloadable flipbooks and PDFs of each version. There are also individual chapters that go into more detail – www.cerebralpalsy.org.nz/cerebral-palsy/the-early-years-0-5
Please share the toolkit with anyone that you think needs to see it – whānau, friends, teachers, GPs, clinics, medical centres….. We really want to make sure this toolkit gets into the right hands.
Celebrating Sara Sheehan
Farewell and ka kite anō to one of our much-loved staff members, Sara Sheehan. After six years working for the Society, Sara is leaving her role as Member Support and Programmes Coordinator and is retiring on April 3.
Over the years Sara has been responsible for the getOnYourTrike programme, she managed all the coffee groups and hosted two of the Auckland ones, carried out presentations in the community, organised several fun days and outings for members, and represented the Society at expos and events.
She has answered countless phone calls from members, and I’m sure you will miss hearing her understanding and sympathetic voice.
Sara has always been a reliable and steady pair of hands in our team, more than happy to pitch in and help when needed. She consistently puts members first in everything she does.
I know a lot of you will miss Sara – her kind and caring nature, her willingness to share her vast knowledge of orthotics and her approach to members that meant if she didn’t know the answer she would go and find it for you.
Thank you for everything Sara. The Board, Management and your colleagues wish you well as you make the most of retirement.
Living with CP
We’re very excited to share a new section on our website that we’ve just launched. It’s called Living With CP and it offers a host of practical articles about – you guessed it – living with CP.
There are some previously published articles (like keeping warm in winter), updates on popular articles (like finding the right footwear), and new articles (like sibling relationships).
You can check out the Living With CP articles here – www.cerebralpalsy.org.nz/category/living-with-cp – and you’ll also find the page under the Cerebral Palsy tab on our website.
Be sure to check back every now and then because we’ll be updating it regularly.
If you’ve got any suggestions on topics you’d like us to consider covering, please let us know. Send an email to cpsociety@cpsociety.org.nz
CP Achieve & AusACPDM Symposium
Later this week, the Cerebral Palsy Society’s Research and Member Support Advisor Amy Hogan is speaking at the CP-Achieve and Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) 2025 Symposium in Melbourne.
The symposium will focus on Progress and Possibilities – celebrating 5 years of research through lived experience and planning the future.
Amy and a fellow speaker will open the two-day event with a discussion on what has been achieved in Cerebral Palsy research at CP-Achieve over the last five years. Later in the conference Amy will be speaking on Young Adulthood: A Case for Optimism in a Complicated Landscape.
We look forward to Amy sharing what she learns, and the outcomes of the conference when she returns.
You can find more information about the symposium here: www.cp-achieve.org.au/about/the-cp-achieve-ausacpdm-symposium-2025
Seeking expressions of interest for a CPS project advisory group
The Cerebral Palsy Society is interested in knowing more about the services provided by Health NZ and ACC for people living with Cerebral Palsy – Hōkai Nukurangi in Aotearoa New Zealand.
Cerebral Palsy Society Researcher and Member Support Advisor Amy Hogan is working with New Zealand Cerebral Palsy Register Project Manager Dr Anna Mackey on this project.
They are gathering information from Health NZ, ACC and people with lived experience of Cerebral Palsy – Hōkai Nukurangi in Aotearoa New Zealand.
Amy and Anna are looking for a small group of people to help guide them on aspects of the project development.
Involvement includes attending 3-6 online meetings, reading/reviewing documents, contributing views from a lived experience of the New Zealand health system with ACC or Health NZ.
If you are interested in taking part, please fill in this form https://forms.gle/ygaij598FVLhuhAD9 or email anna@cpsociety.org.nz for more information.
Coffee group
At coffee group, the refreshments are on us! A companion, support worker and/or family member is welcome to accompany members to these groups. Up to $15 worth of refreshments per person is provided.
All the coffee group information is here: www.cerebralpalsy.org.nz/member-services/events/coffee-groups
Coffee groups are currently held in Auckland, Whanganui, Masterton, Wellington and Christchurch.
If you’d like to see a coffee group in your area, please get in touch with us to see what’s involved in being a host. Many of our coffee groups rely on volunteers and wouldn’t happen without them.
Call us on 0800 503 603 or email cpsociety@cpsociety.org.nz.
North Shore Coffee Group:
Our Auckland members may have noticed we’ve had a few hiccups getting the North Shore coffee group off the ground.
The hiccups were out of our control, but we’re delighted to say, we’ve got everything sorted and we’ll be back for coffee and cake from May 7.
We have a new venue for you – Gloria Jean’s Café in Glenfield Mall.
Due to the large number of members attending, we’ll be hosting TWO North Shore coffee groups per month at Gloria Jean’s!
They will be at 10.30am on the first and second Wednesday of the month. Please come along to the group that suits you best.
Em, your host, is looking forward to seeing you there.
Round the Bays 2025
Congratulations to everyone who took part in Round the Bays Auckland on March 2. We hope you enjoyed the day.
Thank you to everyone who took the time to set up a fundraising page and seek donations from whānau and friends for the Cerebral Palsy Society.
Every single donation is very much appreciated.
Among those who took part in the Auckland event and fundraised for us were CP Society member Nila Brown, 4, and her supporters, pictured. Thanks for all your efforts team!
Round the Bays Christchurch was held yesterday, Sunday, March 30. If you went along, we hope you had the best day.
Thank you for the support
The Cerebral Palsy Society relies on donations and grants to help us do the mahi we do for Kiwis living with Cerebral Palsy – Hōkai Nukurangi.
With that in mind, we want to say a massive thank you to the Trusts, Foundations and friends that have supported us. Most recently:
– Four Winds Foundation
– Roy Owen Dixey Charitable Trust
You can check out all the Trusts and Foundations that support the Society here: www.cerebralpalsy.org.nz/our-supporters
CP Society e-Card
How to check your e-card balance:
It’s easy to check the balance on your e-card. Simply:
– Go to https://ecardsolutions.nz/portal/cps/
– Check your last receipt
– Or go to www.cerebralpalsy.org.nz, click the Dashboard button, sign in and click the “Check Your E-Card Balance” button.
How to add a supplier to the e-card programme:
Ever wondered how to add a company or service provider to the Cerebral Palsy Society’s e-card programme?
We’ve written a step-by-step guide to help you. Feel free to share the link with companies and service providers that you think would be interested in becoming a supplier. www.tinyurl.com/b8j7s3j5
Leave a gift in your will
Like us, we know you’ll want to ensure a future where people with Cerebral Palsy – Hōkai Nukurangi can enjoy their lives to the full – with endless opportunities, and the support in place so they can say YES to everything that makes them thrive and brings them happiness.
An easy and powerful way to ensure this future for our mokopuna is to leave a gift in your will. This kind of donation means you don’t have to find cash now or take part in a fundraising event. Of course, your own whānau will take priority, but once you’re satisfied that their needs will be met, it’s simple to include a gift of any size in your will to the Cerebral Palsy Society.
There are three types of gift you might choose to give:
– A specific sum or percentage of your estate
– The residue of your estate (once other gifts and costs have been deducted)
– A specific gift – for example, shares, bonds, or property.
Whether you’ve already made a will and would like to make an addition, or you’re ready to write your first one and include support for the Cerebral Palsy Society, we recommend you work with a legal advisor to make sure this important document is written exactly as you wish.
Head to our website to find out more: www.cerebralpalsy.org.nz/support-us/bequests-2/
Research opportunities
Have you thought about getting involved in some of the research opportunities out there?
When you take part in research, you’re helping create a more informed and clearer picture for people living with Cerebral Palsy – Hōkai Nukurangi across Aoteaora New Zealand, guiding advocacy and efforts towards change.
Current opportunities on our website:
– KiwiASQ (Ages and Stages Questionnaire)
Researchers from Starship Child Health are looking for children and their whānau, living in Auckland, to test the KiwiASQ (Ages and Stages Questionnaire).
The questionnaire is completed online and participants will spend a morning at a university or community clinic, watching their child play games-based assessments and giving feedback.
Participants will get a summary of their child’s speech, development, hearing and behaviour, a koha, and a book for their child.
– Transition to Adulthood
This study from the University of Toronto is looking at improving the transition to adulthood for youth diagnosed with Cerebral Palsy – Hōkai Nukurangi. Researchers are looking to get the perspective of youth aged between 12-17, and their parents, on their experiences and expectations during this transition process.
– Exploring Parental Perspectives: CMV Screening and Diagnosis in New Zealand through the Lens of Families
The University of Auckland is recruiting families of children affected by Cytomegalovirus (CMV). This work will provide information about what families want and need to know at the time of their child’s diagnosis, and later as they continue their journey with CMV. Researchers are looking for participants aged approximately 18 years old.
Head to our Research Opportunities page for more information about these opportunities: www.tinyurl.com/2va843ke
Project update
A 2022 project funded by Starship Foundation looked at the impact of respiratory health in young people with Cerebral Palsy in Aotearoa New Zealand. The project has been completed and an update is available here www.tinyurl.com/p945n59c, with a link to the full research article.
Well, that’s all from me and the team for now. All the best for the coming month. I look forward to bringing you more news at the end of April.
Ngā mihi,
