New Zealand Down Syndrome Association (NZDSA)

Empowering Support for Breastfeeding Mothers of Babies with Down Syndrome.
2024-10-16 12:00 - 13:00 (Pacific/Auckland) | Zoom, New Zealand
The World Health Organization (WHO) recognises breastfeeding as a critical component of infant health and feeding, and this offers numerous benefits to babies, including those with Down syndrome (World Health Organization, 2019). This presentation examines the evidence supporting the unique advantages of breastfeeding for infants with Down syndrome and its potential to optimise their health outcomes. Research indicates that breastfeeding can play a crucial role in supporting the health and development of babies with Down syndrome

Heather Miller

Heather Miller has worked in intellectual disability health for over 20 years and is a registered nurse specialising in intellectual disability nursing, her initial nursing qualification. Her experience includes community learning disability nursing in the UK, medical undergraduate teaching in developmental disability health, content contributor in post graduate nurse education on managing the heath needs of people intellectual disability, and disability case management in the non-government sector. She currently works as a disability practice nurse in general practice. Heather holds a Certificate IV in Breastfeeding Education (Community) and has been a breastfeeding educator with the Australian Breastfeeding Association for over 15 years. She provides education and support to expectant mothers, and mothers who are breastfeeding their baby with Down syndrome, health professionals and is a disability resource breastfeeding educator on breastfeeding and Down syndrome at ABA.
Her most rewarding job however is being mum to her nine year old son who has Down syndrome, teaching her more than anything she has learnt in her career and training!

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Brain Train: SMART Actions That Might Boost Cognition and Prevent Alzheimer's disease in people with Down syndrome
2024-10-15 12:00 - 13:00 | Zoom, New Zealand
Two of the most common, yet challenging, questions that Dr Skotko is asked by caregivers: (1) How can you prevent Alzheimer’s disease in people with Down syndrome? and (2) How might we boost their cognition? While exciting research is unfolding in laboratories across the world, there are strategies that caregivers can take right now in respect to these two questions.
In this presentation, Dr Skotko reveals his recommendations.

Dr Brian Skotko

A Board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital’s Down Syndrome Program, he has dedicated his professional energies toward children with cognitive and development disabilities.
He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently a Professor of Pediatrics at Harvard Medical School. Dr. Skotko is a leader on clinical and translational research about Down syndrome. He has been featured in The Wall Street Journal, The New York Times, The washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.

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Easy Tips for Home to Support Early Development Through Play and Connection
2024-10-14 19:30 - 21:30 | Zoom, New Zealand
It is commonly known that ‘early intervention’ is key in ensuring the best possible outcomes for children with Down syndrome. And while access to a comprehensive team of therapists to support this is ideal, it is often not an option in Aotearoa for all whānau. However, there is a lot that families can do without specialist equipment or training that will naturally support their toddlers’ development. Through small changes to daily routines and play, caregivers can lay a lifelong foundation of connection, curiosity and independence.

Clare Pudney

Clare Pudney is a Speech Language Therapist and Clinical Director of the Pudney Hub, an early intervention centre based in the Hawke’s Bay for children under 6. She has over 15 years experience, including time in early intervention services in Australia, establishment of disability services in Laos and specialist schools in New Zealand. Her passion is nurturing communication and connection in whatever form works best for children and their whānau. Her approach has a strong emphasis on play being the best vehicle for supporting the development of the whole child.

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Diving off the Blocks: Being a Pioneer on the S18 Swimming Competition Pathway
2024-10-12 16:30 - 17:30 | Zoom, New Zealand
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You Tube – My Voice. When Words Fail Me, YouTube Tells My Story
2024-10-12 16:00 - 17:00 | Zoom, New Zealand

Inclusive Literacy Design – Education to Enhance Literacy, Communication, and Social Inclusion
2024-10-10 19:30 - 20:30 | Zoom, New Zealand
It’s crucial to consider how children and young people develop their ability to express themselves through spoken, visual, and written language.
Teachers and families can aid in this development by using a range of tools. Inclusive literacy design helps students develop their literacy skills across all subjects. It aims to improve their understanding, competency, communication, and comprehension. By doing so, students can communicate independently, engage, and learn within the curriculum and community, and participate fully in their own unique way. By using the four-resources model and multisensory approach, students can create meaning within texts and produce their own texts. Teachers and families can aid in this development by using a range of tools such as ICT, literacy resources, and communication strategies
Inclusive Literacy Design Packs are developed as part of workshops. These packs are the foundation to help students learn strategies that they can use throughout the school years, later in tertiary education or work opportunities. The evidence-based approach is enjoyable and popular with students, teachers, and families.

Dr Maree Kirk

Dr Maree Kirk is the director of Networks of Expertise – Supporting Teachers Practice for learning disability and Down syndrome. The first Network of expertise to be awarded a Ministry contract for the Professional Learning and Development of teachers and kaiako working with Down syndrome and those with learning disability students. Dr Maree Kirk is the Developer and National Director of Supporting Teaching Practice for students with learning disability and Down syndrome (STPDS), a capability model that she has run as a national collaborative programme that has reached over 250 schools in New Zealand, thanks to Lotteries, COGS, TECT, and local community Trusts. https://www.stpds.co.nz/home She is the Regional Coordinator of the Bay of Plenty Down Syndrome Association Inc.

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Democracy and Down Syndrome
2024-10-10 12:00 - 13:00 | Zoom, New Zealand
When democracy was first getting started, only men with property could vote. these days, in most parts of the world, everyone over the age of 18 can have a say in who their leaders are – whether they have two X chromosomes or three copies of chromosome 21! Unfortunately, much of the political process is still challenging for the majority of citizens to navigate. In this presentation, you’ll hear about how NZDSA approached this issue in the New Zealand elections last year, and some ideas for getting engaged with democracy at all levels -from the local to the national to the global!

Dr. Sarah Paterson-Hamlin

Dr. Sarah Paterson-Hamlin is a locally elected member of the Whau Local Board within Auckland Council and the Editor of CHAT 21, the NZDSA’s journal. She is also a published poet with a focus on political themes and serves as the Funding Coordinator for the Raukatauri Music Therapy Trust.

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Success in Education – NZ Maths
2024-10-09 19:30 - 21:30 | Zoom, New Zealand
Numicon and other approaches have provided schools and families with tools to make the understanding and use of maths accessible. The results are exciting and provide a justification for the inclusive education of our children. The impact of inclusion is far-reaching. We will explore the challenges of maths, research in education of children with Down syndrome, using maths every day and the use of the Numicon approach. Other resources shared: Maths for Life, Maths No Problem, EY Maths, Time4Learning, and See and Learn.

Margi Leech

Margi Leech has extensive teaching experience both in New Zealand and internationally, working with students from new entrants to secondary levels. Over 15 years ago, driven by a commitment to support her neuro-diverse children, she explored effective math teaching methods and discovered the ‘mastery’ approach through the work of Tony Wing and Dr. Helen Drury.
This led her to implement the Numicon programme, which employs a concrete-pictorial-abstract (CPA) model and significantly enhanced her children’s mathematical understanding. Inspired by this success, Margi deepened her expertise in structured math instruction based on science of learning principles and founded Edushop to positively influence math outcomes for students nationwide.

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Empowering your Child's Journey: The Crucial Role of Speech-Language Therapy
2024-10-09 12:00 - 13:00 | Zoom, New Zealand
This presentation is aimed at parents of young people with Down syndrome, focusing on the profound impact of speech-language therapy in enhancing their child’s quality of life. The presentation will emphasise how speech-language therapy goes beyond communication skills, serving as a key component in fostering independence, confidence, and overall well-being.

Victoria Smith

Victoria joined UpsideDowns in January of this year (2023) and is thrilled to be part of such a great charitable trust. She’s worked in education for over 20 years, both internationally and domestically, from Kindergarten to Adult, and her foundations in ESOL (English as a Second Language) and Second Language Acquisition instilled the importance of communication skills that remain at the core of all she does. Born in the North-East of England, she moved to New Zealand in 2007 and now lives in West Auckland with her husband, daughter, and furry best friend, Sam the spoodle. Victoria loves future technologies and networking and can’t wait to spread the word about the amazing work UpsideDowns does and how more people and organisations can be part of the vision of ‘Giving a voice to kids with Down syndrome’.

Polly Newton

Meet Polly, the friendly face behind Speech Teacher! With a heart full of dedication, Polly launched Speech Teacher to lend a helping hand to parents and kids navigating speech delays. As a seasoned Speech Language Therapist and a parent herself, Polly gets the ups and downs of family life. Her mission? Ensuring that everyone’s voice is heard loud and clear, without any doubts. Polly holds a Bachelor of Speech Language Therapy from Massey University, Auckland, New Zealand – though she jokes it sounds more like a delicious sandwich (mmm,B.SLT!). She’s proudly affiliated with the New Zealand Speech-Language Therapists’ Association (NZSTA) as a registered member.
With over 17 years of expertise in the New Zealand education sector, Polly’s journey has been remarkable. Her path includes roles with The Ministry of Education, Accident Compensation Corporation (ACC), Rural Education Activities Programme (REAP), and Special Schools, among others.
Through the years, Polly’s honed her craft to perfection. She’s not just about teaching; she’s about delivering an exceptional experience. By staying updated with the latest research, listening to families’ needs, and embracing newfound inspirations, Polly ensures that her practice evolves in the best possible way. Perfecting her approach is a top priority – all to serve families like yours in the most remarkable way.

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Self-Advocates with Down syndrome Reflect on Their Role as Co-Designers and Co-Researchers on an inclusive research process
2024-10-08 19:30 - 20:30 | Zoom, New Zealand
In 2020 the New Zealand Down Syndrome Association’s (NZDSA) leadership and advisory group for people with Down syndrome, known as STRIVE, decided to conduct research to understand how people with Down syndrome in Aotearoa New Zealand were coping with the COVID-19 pandemic and the first major lockdown. The presenters will discuss the team’s experiences and reflections within an inclusive research approach, where disabled and non-disabled individuals collaborated as co-designers and co-researchers to conduct research and publish their findings in an academic journal. During the presentation, the presenters will explain the reasons behind their decision to undertake research on a topic of their choice and of particular interest. They will also discuss how they utilised an inclusive research approach and highlight their active participation in every stage of the research process. Specifically, they will discuss their involvement in designing the research questions, choosing the design approach and method, recruiting participants, collecting and analysing data, drawing conclusions, preparing an academic article, publicising the findings, and advocating for impact. The presenters will also highlight the concept of reflexivity, which is the continuous process of self-reflection that researchers need to undertake to become more aware of the research process. They will also explain how reflexivity was beneficial as a team activity, as it enhanced the rigour and quality of the research, resulting in more robust findings. In addition, the presenters will provide a brief summary of the findings from their COVID-19 research.

Andrew Oswin

Andrew Oswin is an inaugural member of STRIVE, a current member of STEP-UP and an ambassador for Down Syndrome International.

Dr Franco Vaccarino

Researcher

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Enhancing Employment for Individuals with Down Syndrome
2024-10-08 12:00 - 13:00 | Zoom, New Zealand
Join us for an engaging session that will kick off with the launch of a new video designed to enhance the New Zealand Down Syndrome Association’s (NZDSA) employment resource kit. Created in partnership with Kindred – Psychology at Work, this video is a key component in promoting inclusive hiring practices and supporting both job seekers with Down syndrome and employers. Following the video launch, we will explore how these new resources integrate with Recreate NZ’s Moxie Programs to offer a comprehensive approach to improving employment opportunities for individuals with Down syndrome.

Sarah Ferens

Sarah leads the Moxie programme at Recreate NZ, supporting quality employment outcomes for people with intellectual disabilities across New Zealand. Moxie fosters courageous spirit in trainees, community members and employers, aiming to challenge limiting perceptions in society and to break the barriers to employment.

Kate Maroulis

Kindred – Psychology at Work is an organisational development and talent consultancy. Directors Kate Maroulis and Georgina Kirk have partnered with the New Zealand Down Syndrome Association to design a series of resources to support more people with Down syndrome to gain meaningful employment. Kate and George are Psychologists registered with the New Zealand Psychologists Board and passionate about creating New Zealand workplaces where everyone is included.

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Working towards making sleep in Children with Down syndrome better
2024-10-07 19:30 - 20:30 | Zoom, New Zealand
Almost all children with Down syndrome will experience sleep problems during childhood.
However, sleep is not often a priority for management, with the focus being on other more acute medical problems. Studies have shown that children with Down syndrome who also have sleep problems have poorer outcomes and family functioning can be significantly affected by poor sleep in the child with Down syndrome. This talk will discuss all things related to sleep in children with Down syndrome. The talk aims to describe some of the challenges faced by families when seeking treatment for sleep, referring to research that has been undertaken in Queensland around improving evaluation and treatment of sleep in children with Down syndrome.

Associate Professor Jasneek Chawla

Associate Professor Jasneek Chawla is a Paediatric Respiratory and Sleep Medicine Specialist at Queensland Children’s Hospital, Brisbane and leads the Kids Sleep Research Group at the Child Health Research Centre, University of Queensland. Her research interests include sleep in children with complex disability and the development of novel measurement tools for paediatric sleep medicine. A/Prof Chawla holds a Children’s Hospital Foundation, Early Career Fellowship and is leading a multi-centre MRFF funded study focused on improving the diagnosis and management of sleep disorders in children with neurodisability. Her PhD work focused on sleep problems in children with Down syndrome and provided the foundations for her ongoing research and forged a strong connection with Down syndrome Queensland and Down syndrome Australia. A/Prof Chawla is a board director for the Australian Sleep Association and is chair of the Education Committee and deputy chair of the conference committee. She is a strong advocate for children with disability and chronic illness and collaborates widely with many consumer representative organisations and individuals with lived experience through her research.

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How Does it Feel Being a Photographer
2024-10-05 | Zoom, New Zealand

Hogwarts in our home
2024-10-04 16:00 - 17:00 | Zoom, New Zealand

Assume I Can. Parents’ Journeys: Creating a Good Life for Their Children
2024-10-03 19:30 - 21:30 | Zoom, New Zealand
This panel features parents sharing their experiences in striving to create a good life for their children. They will discuss the challenges they’ve faced, the strategies that have supported them, and the sources of resilience that have helped them persevere. This discussion aims to provide inspiration and ractical advice for parents facing their own challenges and to foster a supportive community of shared experiences and collective wisdom.

Angelique van der Velden

I wear many hats. I have a background in Education (music, economics and special ed), and I am a qualified communication therapist (use music, colour, movement and drama). My son Luka has Down Syndrome and he has big ideas about what he wishes to achieve and how he wants to live. I often feel I should take a leaf out of his book. He lives life like Aquaman – nothing is impossible and his life is rich and full.
What does the future hold? I watch the world with wonder and hope for the best.

Dr Carey-Ann Morrison

Dr Carey-Ann Morrison is the Chief Disability Advisor in Commissioning at Health New Zealand Te Whatu Ora. She joined Te Whatu Ora in February 2024 following 10 years working in the community/NGO space. Most recently, she was the Chief Executive of SAMS and was a member of the National Enabling Good Lives Leadership Group. She also holds an honorary position at the University of Waikato. Underpinning her work is a commitment to prioritising the voice and self-determination of disabled people and their families as experts on their own lives and community needs. Carey-Ann is a proud parent to a young disabled son.

Dr Gretchen Good

Gretchen Good, PhD, is Mum to two high school-aged children who live with Down syndrome. She is a certified Orientation and Mobility Specialist and Vision Rehabilitation Therapist. Gretchen’s research platform is related to disability advocacy, inclusion and access; disability and disasters; and disability and mothering.

James Lonsdale

Hi, I’m James Lonsdale – father to 3 kids, the eldest, Hannah has Downs Syndrome. We have lived in Christchurch for all of Hannah’s life apart from 2 years when we lived in Toulouse, France Hannah was aged 11 – 13. I enjoy the outdoors and try to drag Hannah out when I can. We have a tandem bike that we enjoy riding (especially when we ride it to a café).
Hannah turns 23 early October and has two younger siblings – Jasper 21 and Penelope 19. I am married to Rachel who is working full time as a primary school teacher doing the Nurture Class and Reading literacy. I work for Air NZ engineering as a Project Manager.

Kaye Young

My name is Kaye and my husband Roger and I, are the proud parents of three sons, all of whom live in Christchurch. Our second son – James has Down syndrome, Autism and Coeliac disease and for the last 7 years has lived in a house 5 minutes away from us. We purchased the house for him, and 3 classmates moved in with James, when they all finished school at the age of 21. James and his flatmates are still living together successfully and enjoying a good life in the community. Staff from a local residential provider provide 24/7 support through EGL Funding.
Roger and I live on a lifestyle property on the outskirts of Christchurch, which keeps us busy, alongside pursuing our own interests. For the last 8 years I have been a keen tramper and love being out in the mountains. When our sons were still at home, I was very involved in charity work as a volunteer with the Canterbury Down Syndrome Association, founded the UP Club in Christchurch, was instrumental in getting Sunshine Football going for children with a disability and for a couple of years I worked for Parent to Parent. Prior to that I did a commerce degree at Canterbury University and majored in accountancy.

Paula Beguely

I live in Auckland, with husband Tom, and two beautiful daughters Harriet (11) and Charlotte (8).
Our journey with the Down syndrome community started with Charlotte was born in 2016. I have been the Community Liaison with Auckland Down Syndrome Association for 5 years. This role is home based – but I’m out in the community a lot! I’m very passionate about changing the narrative for people with Down syndrome by highlighting their strengths and capabilities, and showing others the joy that Charlotte brings to whanau. I’m currently building my advocacy skills as Charlotte journeys through our local primary school. I’m also the coordinator and a presenter for the ADSA Success in School education workshop.

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Keeping Children and Adolescents with Down Syndrome Healthy
2024-10-03 12:00 - 13:00 | Zoom, New Zealand
In this presentation, Dr Brian Skotko reviews all of the questions and concerns that parents most often have about their sons and daughters with Down syndrome. He provides the answers and action steps, stemming from the latest clinical research on people with Down syndrome. Based on his clinical experience in the Down Syndrome Program at Massachusetts General Hospital, Dr Skotko makes sure that every parent can anticipate medical conditions so that the potentials of all people with Down syndrome are maximized.

Dr Brian Skotko

A Board-certified medical geneticist, Dr. Skotko is the Emma Campbell Endowed Chair on Down Syndrome at Massachusetts General Hospital. As the Director of the hospital’s Down Syndrome Program, he has dedicated his professional energies toward children with cognitive and development disabilities. He co-authored the national award-winning books, Common Threads: Celebrating Life with Down Syndrome and Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School, and he is currently a Professor of Pediatrics at Harvard Medical School. Dr. Skotko is a leader on clinical and translational research about Down syndrome. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s “On Point,” and ABC’s “Good Morning America.” Dr. Skotko has a sister with Down syndrome and serves on the Honorary Board of Directors for the Massachusetts Down Syndrome Congress.

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Success in Schools Workshop
2024-08-05 08:00 - 2024-08-06 17:00
Success in Schools

Success in School for children who learn differently —Providing detailed information, practical guidance, and strategiesfor educating students with Down syndrome and other special learning needs.
Who is it for?SENCO’s, teachers, teacher aides, specialist staff, and parent educators, and anyone involved in educating of students with Down syndrome and other special learning needs.
Topics covered include:Inclusion, Learning Profile of students with Down syndrome, Behaviour, Friendships, Numeracy, Literacy, using Visual Aids to Access the Curriculum, and Collaboration for Success – IEP’s.In addition you will hear from 3 adults with Down syndrome who talk about their school experiences.

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NZDSA and Kindred Video Launch Event
2024-07-30 12:30 - 13:30 | Zoom, New Zealand
The NZDSA and Kindred are excited to invite you to join our video launch event, complementing our current Employment Resources. This event will feature videos of employers and employees sharing their thoughts and experiences on successful inclusive hiring and employment.
Georgina Kirk and Kate Maroulis from Kindred – Psychology at Work will also provide an overview of the Employer Resource Toolkit, a guide for employers on hiring people with Down syndrome, and the Career Plan Workbook, a guide for job seekers.
The event will take place online on the 30th July 2024 from 12:30 pm to 1:15 pm. You can access the Zoom link below and view the promotional video.
This resource has pan-disability relevance. Please share the information with your networks.
Topic: Launch of Employment Stories
Time: July 30, 2024 12:30 -1.15PM Auckland, Wellington
Join Zoom Meeting
https://us02web.zoom.us/j/87813848158?pwd=[REDACTED]
Meeting ID: 878 1384 8158
Passcode: [REDACTED]

World Down Syndrome Congress 2024
2024-07-09 08:00 - 2024-07-12 17:00 | brisbane australia, Brisbane, Australia

ADSA Parents Night Out
2024-05-28 18:30 - 21:30 | Brothers Brewery Mt Eden, 5 Akiraho St, Mt Eden, Auckland, New Zealand
ADSA Parents Night OutThis is an event for ADSA parents! A great chance to catch up socially with other parents in a relaxing setting. You are welcome for as little or long as you like. Just a drink, or dinner as well – its up to you.Its a great way to take some time to fill your bucket, sharing stories with other parents in the community and ALWAYS having a great laugh too.RSVPs are to Angela – 027 605 4496
View Facebook Event here

Korero & Kai Napier
2024-05-28 | Havelock North Function Centre, 30 Te Mata Road, Havelock North, New Zealand

STRIVE Funshop
2024-05-17 08:00 - 2024-05-19 17:00 | Christchurch

ADSA Under 12's Get Together
2024-05-05 | Grey Lynn Community Centre, 510 Richmond Road, Grey Lynn, Auckland, New Zealand

Korero & Kai Dunedin
2024-05-02 | Scenic Hotel Southern Cross, 118 High Street, Dunedin, New Zealand

Korero & Kai Invercargill
2024-04-30 | Langlands Hotel, 59 Dee Street, Invercargill, New Zealand

World Down Syndrome Day
2024-03-21
