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X-WR-CALNAME:New Zealand Down Syndrome Association (NZDSA)
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X-WR-CALDESC:Events for New Zealand Down Syndrome Association (NZDSA)
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DTSTART;TZID=Pacific/Auckland:20261012T193000
DTEND;TZID=Pacific/Auckland:20261012T203000
DTSTAMP:20260904T235145Z
CREATED:20260904T235145Z
LAST-MODIFIED:20260904T235145Z
UID:18214-1791833400-1791837000@nzdsa.org.nz
SUMMARY:Helping Children with Down Syndrome Sleep Better: Poor Sleep Isn’t “Just Part of It”
DESCRIPTION:Helping Children with Down Syndrome Sleep Better: Poor Sleep Isn’t “Just Part of It”\nSleep problems are often normalised in children with Down syndrome. Families may not seek help\, thinking this is “part” of having a child with Down syndrome or may be dismissed when presenting to health professionals. However\, sleep is one of the few modifiable factors that can contribute to improved outcomes for children with Down syndrome and their families. This talk will focus on the importance of seeking support for sleep challenges in children with Down syndrome\, highlighting the debilitating impact on both child and family from chronic sleep disruption and outlining an approach to management of both respiratory and non-respiratory sleep problems. \nPresenter\nAssociate Professor Jasneek Chawla is a Paediatric Respiratory and Sleep Medicine Specialist at Queensland Children’s Hospital\, Brisbane. She also leads the Kids Sleep Research Group at the Child Health Research Centre and is President of the Australasian Sleep Association \n\nBiography\nAssociate Professor Jasneek Chawla is an experienced physician and a clinician researcher with an interest in sleep in children with complex disability and in developing emerging paediatric sleep technologies. In 2025\, she was awarded the CHQ Research in Excellence Award and acknowledged for her research by the Australian Institute of Policy and Science\, voted as one of Queensland’s ten Young Tall Poppies. Jas is the president of the Australasian Sleep Association\, the national peak body for sleep professionals- she is the first paediatric specialist to undertake this role. Jas is also part of the UQ disability collaboratory leadership group and is a strong advocate for children with disability and chronic illness. She collaborates widely with many consumer representative organisations\, including a long-standing relationship with Down Syndrome Australia. She works alongside individuals with lived experience through her research\, directing and translating her findings into clinical practice. \nTheme: Health\nAudience: Parents\, professionals and whānau \n 
URL:https://nzdsa.org.nz/event/helping-children-with-down-syndrome-sleep-better-poor-sleep-isnt-just-part-of-it/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/jasneek-chawla.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261012T120000
DTEND;TZID=Pacific/Auckland:20261012T130000
DTSTAMP:20260906T062734Z
CREATED:20260904T234938Z
LAST-MODIFIED:20260906T062734Z
UID:18211-1791806400-1791810000@nzdsa.org.nz
SUMMARY:Friendship Matters: Planning Opportunities for Connection\, Capability and Wellbeing
DESCRIPTION:Friendship Matters: Planning Opportunities for Connection\, Capability and Wellbeing\nFriendship is a key part of wellbeing\, belonging and a good life\, yet opportunities for friendship and social connection do not always happen naturally for people with Down syndrome.\nDrawing on my PhD Theory of Wellbeing\, in which friendship is a key domain\, and my subsequent capability work\, I will explore how we can intentionally plan and organise opportunities for friendship\, social participation and connection.\nI will consider how building social capability — getting along with others\, communicating\, participating\, making choices and developing independence — can support people with Down syndrome to build and sustain relationships across school\, work and community life.\nLinking with the 2026 World Down Syndrome Day theme\, Together Against Loneliness\, I will move beyond simply recognising loneliness to consider what we can practically do to create the opportunities\, environments and supports in which friendship can grow.\nWe cannot manufacture friendship\, but we can plan opportunities and build the capability that make friendship possible. \nPresenter\nDr Maree Kirk\nDirector of the Bay of Plenty Down Syndrome Association and National Director of Supporting Teaching Practice for Students with Learning Disability and Down syndrome (STPDS) \n  \nBiography\nDr Maree Kirk is a wellbeing and capability consultant with extensive experience across health\, education\, disability\, and inclusive practice. She is the Director of the Bay of Plenty Down Syndrome Association and National Director of Supporting Teaching Practice for Students with Learning Disability and Down syndrome (STPDS)\, a professional learning and development programme reaching more than 600 participants annually. Dr Kirk led the first Ministry of Education pilot projects for professional development focused on students with learning disability and Down syndrome and served as Contract Director of the Network of Expertise (NEX)\, the first national contract of its kind. Her PhD research developed the theory of wellbeing for children and young people with disability\, centred on three principles — acceptance\, recognition\, and supported independence — which underpins her Capability Model for inclusive education in Aotearoa New Zealand \nTheme: Education and Wellbeing\nAudience: Parents\, whānau and professionals \n 
URL:https://nzdsa.org.nz/event/friendship-matters-planning-opportunities-for-connection-capability-and-wellbeing/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/friendship-matters-maree-kirk.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261010T163000
DTEND;TZID=Pacific/Auckland:20261010T170000
DTSTAMP:20260906T062517Z
CREATED:20260904T234741Z
LAST-MODIFIED:20260906T062517Z
UID:18208-1791649800-1791651600@nzdsa.org.nz
SUMMARY:How I keep from being lonely
DESCRIPTION:How I keep from being lonely\nI’m talking about all of the activities I do to stay in touch with friends and feel like I’m part of the community. \nPresenter\nAmelia Eades\nSelf-advocate \nBiography\nI’m 29 and flatting with a friend in Auckland. I have two part time jobs\, I’m in Special Olympics Swimming\, I do activities with Recreate and I’m with a talent Agency called All Is For All. I have a busy life. \nTheme: Self-advocacy\nAudience: All welcome\nJoin Zoom Meeting\nhttps://us02web.zoom.us/j/82137026713?pwd=9Ity66UORsYL9lxVQQLm338hS0uhdD.1\nMeeting ID: 821 3702 6713\nPasscode: 611298
URL:https://nzdsa.org.nz/event/how-i-keep-from-being-lonely/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/how-i-keep-from-being-lonely.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261010T160000
DTEND;TZID=Pacific/Auckland:20261010T170000
DTSTAMP:20260906T062521Z
CREATED:20260904T234535Z
LAST-MODIFIED:20260906T062521Z
UID:18205-1791648000-1791651600@nzdsa.org.nz
SUMMARY:Friendship Matters: Building Real Connections
DESCRIPTION:Friendship Matters: Building Real Connections\nLearn more about the IHC Friendship Programme\, how it supports people to build genuine friendships and connections\, and how you can join the programme. \nPresenters\nHannah Verry\nOnline Volunteer Coordinator (National)\nIHC \nHamish Gilbert\nSelf-Advocate Ambassador for the Online Friendship Programme\nIHC \nBiographies\nHannah Verry is IHC’s Online Volunteer Coordinator\, supporting the national Online Friendship Programme. She helps connect people with intellectual disability with volunteers who share their interests\, supporting friendships and meaningful connections through online and phone-based activities. Hannah is passionate about creating opportunities for people to build friendships\, stay connected and be part of their communities\, wherever they live in Aotearoa New Zealand. \nHamish Gilbert is recognised for his achievements in education\, sport\, work\, and advocacy. He gained NCEA Levels 1 and 2 and the Duke of Edinburgh Gold Award\, and now works at Bunnings while running a recycling enterprise. A strong advocate for inclusion\, he has spoken nationally on accessibility. Hamish is also a decorated Special Olympics athlete\, named Athlete of the Year in 2022. He is also one of the NZDSA 2024 National Achievement Award recipients. \nTheme: Friendship\nAudience: All welcome\nJoin Zoom Meeting\nhttps://us02web.zoom.us/j/81766381423?pwd=MZIzcnvbtOAiWoxrbC2MZNqVB9PwOH.1\nMeeting ID: 817 6638 1423\nPasscode: 289952
URL:https://nzdsa.org.nz/event/friendship-matters-building-real-connections/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/friendship-matters.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261009T120000
DTEND;TZID=Pacific/Auckland:20261009T130000
DTSTAMP:20260906T062255Z
CREATED:20260904T234334Z
LAST-MODIFIED:20260906T062255Z
UID:18202-1791547200-1791550800@nzdsa.org.nz
SUMMARY:An introduction to the online independent living and money game Stand Tall
DESCRIPTION:An introduction to the online independent living and money game Stand Tall\nStand Tall was designed by the IHC Library for all young people in New Zealand including those with intellectual disabilities\, neurodiversity and autism.\nStand Tall is a free online money game available to play on the web – www.ihc-standtall.com or download from the Google Play or Apple App stores.\nPlayers create an avatar\, learn about budgeting\, and navigate various scenarios. Each scenario offers three choices\, impacting the avatar’s financial and wellbeing scores. Stand Tall has voiceover\, and the scenarios are examples of events that can happen in a shared flat.\nIt’s a fun\, free and engaging learning experience.\nPhil will run through some of the features of the game\, how to play it and the background of how it was developed. \nPresenter\nPhil Clarke is the Head of Library and Information Resourcing at IHC Library\, Wellington \nBiography\nPhil has worked in tertiary and special libraries in the UK and New Zealand. He’s keen for everyone to know about the IHC Library and the service it provides to anyone\, anywhere in New Zealand\, who needs to know about intellectual disability\, autism and associated conditions. \nTheme: Independence\nAudience: All welcome \n 
URL:https://nzdsa.org.nz/event/an-introduction-to-the-online-independent-living-and-money-game-stand-tall/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/an-introduction.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261008T193000
DTEND;TZID=Pacific/Auckland:20261008T203000
DTSTAMP:20260906T062116Z
CREATED:20260904T234106Z
LAST-MODIFIED:20260906T062116Z
UID:18198-1791487800-1791491400@nzdsa.org.nz
SUMMARY:Connecting with Volition
DESCRIPTION:Connecting with Volition\nWe all want connection. An important part of this is communicating to others the things that matter to you. This session will show how the Volition app can help you share what is important to you with other people. We will also look at the Whaimana website about Supported Decision Making and a new website for making Easy Read. \nPresenter\nErika Butters\nFounder of Volition \nBiography\nErika used to work as the Director of The Personal Advocacy and Safeguarding Adults Trust (PASAT)\, one of New Zealand’s only independent disability advocacy organisations.\nWhile continuing as an Advisor to PASAT\, she now is the Founder of Volition\, a social enterprise building digital tools for supported decision-making and self-determination. She also acts as the Chair of Whaimana\, the community and cross-government Supported Decision Making resource development group. \nTheme: Self-determination\nAudience: All welcome
URL:https://nzdsa.org.nz/event/connecting-with-volition/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/connecting-with-volition.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261008T120000
DTEND;TZID=Pacific/Auckland:20261008T130000
DTSTAMP:20260906T062146Z
CREATED:20260904T233919Z
LAST-MODIFIED:20260906T062146Z
UID:18196-1791460800-1791464400@nzdsa.org.nz
SUMMARY:“Rights and Belonging” How practical understanding of rights can combat loneliness
DESCRIPTION:“Rights and Belonging” How practical understanding of rights can combat loneliness\nMatt and Brian will explore\, using practical examples\, how knowledge of rights and how to use them can reduce and combat loneliness. Whether it’s knowledge that you have the human right to connect together\, how you can use education to learn about friendship\, or even using culture to grow friendships\, human rights provide a powerful way of combatting loneliness. \nPresenters\nMatt Frost\nPrincipal Advisor in Whaikaha – the Ministry of Disabled People\nBrian Coffey\nChief Advisor to the Chief Executive at Whaikaha – Ministry of Disabled People. \nBiographies\nMatt Frost is a Principal Advisor in Whaikaha – the Ministry of Disabled People. Matt loves using his knowledge of world affairs and human rights to help enable good lives for disabled people. Matt also enjoys being on a range of boards and connecting with people through sport (especially cricket). \nBrian Coffey is Chief Advisor to the Chief Executive at Whaikaha – Ministry of Disabled People. He is passionate about building communities where disabled people feel welcome\, valued\, and connected. Brian works with disabled people\, whānau\, community organisations\, and government agencies to promote inclusion\, accessibility\, and equal opportunities for all. Brian started his career in education as a teacher and then in the Ministry of Education\, leading work on improving inclusive education. He loves rugby\, basketball and other sports. \nTheme: Advocacy\nAudience: All welcome
URL:https://nzdsa.org.nz/event/rights-and-belonging-how-practical-understanding-of-rights-can-combat-loneliness/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/matt-frost.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261007T193000
DTEND;TZID=Pacific/Auckland:20261007T203000
DTSTAMP:20260906T061922Z
CREATED:20260904T233640Z
LAST-MODIFIED:20260906T061922Z
UID:18191-1791401400-1791405000@nzdsa.org.nz
SUMMARY:The Power of Sport: Connection\, Belonging and Participation
DESCRIPTION:The Power of Sport: Connection\, Belonging and Participation\nFran will share how sport creates opportunities for friendship\, belonging\, confidence and participation\, and the difference this can make in the lives of people with Down syndrome. \nPresenter\nFran Scholey\nChief Executive Officer of Special Olympics New Zealand. \nBiography\nFran Scholey is the Chief Executive Officer of Special Olympics New Zealand. In her role\, she focuses on elevating the organisation’s profile and fostering strategic relationships. Fran has re-established and strengthened relationships with Special Olympics clubs across New Zealand\, building trust and working together for the betterment of the community. She collaborates with stakeholders to redevelop the Special Olympics New Zealand Strategy\, ensuring alignment with the organisation’s mission. She is also working to diversify revenue streams to enhance financial stability and support athletes and volunteers. \nTheme: Health and Wellbeing\nAudience: All welcome
URL:https://nzdsa.org.nz/event/power-of-sport/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/the-power-of-sport.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261007T160000
DTEND;TZID=Pacific/Auckland:20261007T180000
DTSTAMP:20260904T233428Z
CREATED:20260904T233428Z
LAST-MODIFIED:20260904T233428Z
UID:18188-1791388800-1791396000@nzdsa.org.nz
SUMMARY:IHC Disability Election Forum
DESCRIPTION:IHC Disability Election Forum\nRegister here IHC Election Event Registration 2026 – Join us at the Vote for Inclusive Futures Event \nTheme: Advocacy\nAudience: All welcome
URL:https://nzdsa.org.nz/event/ihc-disability-election-forum/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/png:https://nzdsa.org.nz/wp-content/uploads/2026/09/Social-media-2.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261007T120000
DTEND;TZID=Pacific/Auckland:20261007T130000
DTSTAMP:20260906T061722Z
CREATED:20260904T233200Z
LAST-MODIFIED:20260906T061722Z
UID:18185-1791374400-1791378000@nzdsa.org.nz
SUMMARY:Empowering Support for Breastfeeding Mothers of Babies with Down Syndrome
DESCRIPTION:Empowering Support for Breastfeeding Mothers of Babies with Down Syndrome\nThe 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. Breast milk provides essential nutrients\, antibodies\, and bioactive factors that support immune function and protect against infections\, which may be particularly beneficial for infants with Down syndrome\, who may be more susceptible to respiratory and gastrointestinal issues. Breastfeeding has been linked to improved cognitive development and speech-language outcomes in children with Down syndrome. The act of breastfeeding fosters bonding between mother and baby\, promoting emotional well-being and enhancing the parent-child relationship. This presentation highlights the importance of promoting and supporting breastfeeding among mothers of babies with Down syndrome. Strategies for overcoming potential challenges and barriers to breastfeeding in this population will be discussed\, along with the role of healthcare providers and support networks in facilitating successful breastfeeding experiences. This will also include services provided by the Australian Breastfeeding Association\, Australia’s leading authority on breastfeeding information\, education and support. By recognising the unique health benefits of breastfeeding for babies with Down syndrome and providing evidence-based support and guidance to mothers\, we can enhance the health and well-being of these infants and promote optimal developmental outcomes. \nPresenter\nHeather Miller\nA registered nurse specialising in intellectual disability nursing\, and a breastfeeding educator. \nBiography\nHeather 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 with intellectual disability\, and disability case management in the non-government sector. She currently works as a disability practice nurse in general practice. \nHeather 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\, and health professionals. She is a resource volunteer on breastfeeding and Down syndrome at ABA. Her most rewarding job however\, is being mum to her 11 year old son who has Down syndrome\, teaching her more than anything she has learnt in her career and training! \nTheme: Health and Development\nAudience: Parents\, whānau\, and professionals \n  \n  \n 
URL:https://nzdsa.org.nz/event/empowering-support-for-breastfeeding-mothers-of-babies-with-down-syndrome-2/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/empowering-support.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261006T193000
DTEND;TZID=Pacific/Auckland:20261006T203000
DTSTAMP:20260906T061641Z
CREATED:20260904T232956Z
LAST-MODIFIED:20260906T061641Z
UID:18182-1791315000-1791318600@nzdsa.org.nz
SUMMARY:Together\, Not Alone: Supporting Relationships\, Connection and Belonging for People with Down Syndrome
DESCRIPTION:Together\, Not Alone: Supporting Relationships\, Connection and Belonging for People with Down Syndrome\nLoneliness is more than being alone—it is often the result of barriers to belonging\, connection and meaningful relationships. In this session\, Claire Ryan from To Be Frank will explore how families\, whānau and professionals can support people with Down syndrome to build healthy relationships\, develop self-advocacy skills\, understand boundaries\, and make informed choices about their lives. Drawing on practical experience in disability\, sexuality and relationship education\, this presentation will provide accessible strategies\, resources and conversation starters that help create opportunities for connection\, reduce social isolation\, and uphold the rights of people with Down syndrome to participate fully in their communities. Attendees will leave with greater confidence to support relationship wellbeing in ways that are respectful\, rights-based and person-centred. \nPresenter\nClaire Ryan\nFounder To Be Frank \nBiography\nClaire (Ōtākau/Otago) believes that the prevention and elimination of violence\, abuse and neglect experienced by disabled people are paramount – and she’s committed to this kaupapa.\nWith a near 40-year career working in disability\, Claire brings passion and drive\, especially in relation to human rights. She’s creative and motivational\, thriving on the energy of like-minded people.\nClaire’s working life has been dedicated to pushing the boundaries. She’s a firm believer in everyone’s right to live fully in their skin\, without negativity or discrimination. Claire believes in the mahi of VisAble to ensure the protection of everyone’s rights to citizenship and self-determination. \nTheme: Relationships\nAudience: Parents\, whānau and professionals \n 
URL:https://nzdsa.org.nz/event/together-not-alone-supporting-relationships-connection-and-belonging-for-people-with-down-syndrome/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/together-not-alone.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261006T100000
DTEND;TZID=Pacific/Auckland:20261006T110000
DTSTAMP:20260906T061522Z
CREATED:20260904T232606Z
LAST-MODIFIED:20260906T061522Z
UID:18178-1791280800-1791284400@nzdsa.org.nz
SUMMARY:What your other children without Down syndrome are thinking
DESCRIPTION:What your other children without Down syndrome are thinking\nSibling Issues for Parents\nThrough a series of interactive exercises\, parents will explore what questions\, needs\, and concerns are often raised by children who have a brother or sister with Down syndrome. Parents will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine’s publication in American Journal of Medical Genetics and their new book\, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. This workshop is also available on YouTube and online for free. \nPresenters\nDr Brian Skotko\nEmma Campbell Endowed Chair on Down Syndrome\nDirector\, Down Syndrome Program\nMedical Geneticist\, Massachusetts General Hospital Associate Professor\, Harvard Medical School \nSusan Levine\nMA\, CSW\, is a co-founder and social worker at Family Resource Associates\, Inc.\, a private\, non-profit agency serving individuals with disabilities and their families in central New Jersey. \nBiographies\nDr Brian Skotko\nA 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 an Associate Professor 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. \nSusan Levine\nSusan earned a BA degree in psychology from Bucknell University and an MA degree in Child Development and Family Relations from the University of Connecticut. Susan has spent her entire professional career working with children with disabilities and their families. She has conducted support programs for parents and siblings of children with differing abilities for the past 30 years. Among those programs\, Susan has coordinated support groups specifically for parents of children with Down syndrome. She has presented on the needs of siblings at national and regional conferences on Down syndrome\, spina bifida\, and Rett syndrome\, as well as for New Jersey school system parent groups. Additionally\, she has written quarterly newsletters for brothers and sisters (For Siblings Only\, for children aged 4-9\, and Sibling Forum\, for children aged 10 through teen) which are available on the web at the agency website www.frainc.org.\nShe also co-authored the book\, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. \nTheme: Siblings\nAudience: Parents. Professionals and whānau are welcome.
URL:https://nzdsa.org.nz/event/what-your-other-children-without-down-syndrome-are-thinking/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/what-yoiur-other-children.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261005T193000
DTEND;TZID=Pacific/Auckland:20261005T203000
DTSTAMP:20260906T061328Z
CREATED:20260904T232321Z
LAST-MODIFIED:20260906T061328Z
UID:18175-1791228600-1791232200@nzdsa.org.nz
SUMMARY:Finding Your People: How to Create Community
DESCRIPTION:Finding Your People: How to Create Community\nIn this presentation Brigit will tell us what the research says about the impact of loneliness on health and wellbeing. She is also going to talk about ways to find “your people” and create a sense of community in your own life. \nPresenter\nBrigit Mirfin-Veitch\, Kaiuruki Matua – Director\, Donald Beasley Institute \nBiography\nAssociate Professor Brigit Mirfin-Veitch is the Director of the Donald Beasley Institute (DBI). Brigit has led or been involved in a wide range of disability rights-based projects in the area of health and well-being\, access to justice\, violence and abuse\, parenting\, and the progressive realisation of the United Nations Convention on the Rights of Persons with Disabilities\, particularly Article 12 – Equal Recognition Before the Law – and Supported Decision Making. Brigit was centrally involved in the Royal Commission of Inquiry into Abuse in Care as a researcher\, expert witness\, and advisory group member. \nTheme: Research and advocacy \nAudience: Parents\, whānau and professionals
URL:https://nzdsa.org.nz/event/finding-your-people-how-to-create-community/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/finding-your-people.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
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BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261005T120000
DTEND;TZID=Pacific/Auckland:20261005T130000
DTSTAMP:20260906T060913Z
CREATED:20260904T232033Z
LAST-MODIFIED:20260906T060913Z
UID:18172-1791201600-1791205200@nzdsa.org.nz
SUMMARY:Leadership and Agency through Dance
DESCRIPTION:Leadership and agency through Dance\nOver 25 years Jolt has built a community of dancers with intellectual disabilities\, their whānau\, wider disability groups and mainstream organisations. Our work focuses on the individuality of the dancer\, rather than their diagnosis. We believe dance has the potential to empower\, create equitable spaces\, and challenge deficit perspectives about disability. This presentation will share our journey\, what we have learnt\, and the pathways we have created to embed agency and leadership. \nPresenters\nJacob Levington\nKaitiaki Whaikaha\, Jolt tutor\nCaitlin Fleming\nDisability Leader\nLyn Cotton\nFounder and Artistic Director of Jolt \nBiographies\nJacob Levington is an experienced dancer and teacher in Jolt. He is a member of Jolt Performance Company\, he is in charge of his own Jolt classes and is a member of the Kaitiaki Whaikaha team in charge of funding. He has taught and performed nationally and internationally in Glasgow\, Rarotonga\, and South Korea. \nCaitlin Fleming works as an assistant in Jolt Collective\, Drop in and Jolt zoom classes. She has danced with Jolt for 12 years and performed in professional theatres. Caitlin is a member of the Jolt Leadership team. \nLyn Cotton is the founder and Artistic Director of Jolt. Originally trained as a teacher\, Lyn became involved in inclusive dance in London and trained with Wolfgang Stange (Amici dance). In 2001 Lyn established Jolt which has grown to become the largest inclusive dance company in Aotearoa. As Artistic Director\, Lyn has built Jolt into a ground-breaking and fearlessly innovative dance company\, pioneering initiatives such as Jolt Interactive\, performances designed specifically for diverse audiences\, and Move\, New Zealand’s only dance teacher training programme for people with disabilities.\nIn 2014 Lyn won the Attitude TV Award for “Making a Difference” and in 2016 she received a Winston Churchill Fellowship. \nTheme: Performing Arts\nAudience: All welcome \n 
URL:https://nzdsa.org.nz/event/leadership-and-agency-through-dance/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/leadership-and-agency-through-dance.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Pacific/Auckland:20261003T160000
DTEND;TZID=Pacific/Auckland:20261003T170000
DTSTAMP:20260906T061210Z
CREATED:20260904T231319Z
LAST-MODIFIED:20260906T061210Z
UID:18166-1791043200-1791046800@nzdsa.org.nz
SUMMARY:Alex's Good Life
DESCRIPTION:Alex’s Good Life – How Did It Happen?\nAlex will share his personal journey towards creating his Good Life and how he made it happen. He will share what a Good Life means to him\, the importance of having choice and control in his life\, and what he has learned along the way. Drawing on his experience\, strong voice and positive attitude\, Alex hopes to inspire others and help make the world better for everyone. \nPresenter\nAlex Snedden\nSelf-advocate and experienced public speaker \nBiography\nAlex Snedden is a proud man with Down syndrome. He uses his skills to help people with Down syndrome live better and have a good life.\nAlex is a self-advocate and experienced public speaker. He speaks about disability rights\, inclusion\, and treating everyone with respect. He has spoken at big and small events\, including at the United Nations in New York and\, in April 2025\, the Global Disability Summit in Berlin.\nAlex enjoys helping people understand that having Down syndrome does not stop what they can do. Helping other people is important to him\, and he thinks he is good at it. He values being part of his community and believes everyone should have that opportunity.\nAlex lives in his own home in Auckland\, and he chooses what he does and when he does it. He even chooses if he wants to do something or not. This was a big goal of his\, and he planned for his future with his circle of support\, who also support him with his decisions. His Catholic faith is also a very important part of who he is and his life.\nAlex works hard to show what is possible. He has many friends and knows what a good life means for him. He wants to use his experience\, strong voice\, and positive attitude so that the world is better for everyone. \nTheme: Self-advocacy\nAudience: All welcome\nJoin Zoom Meeting\nhttps://us02web.zoom.us/j/87356366041?pwd=saRr5E7irdbTsabkPG7PlamMPrU5Va.1\nMeeting ID: 873 5636 6041\nPasscode: 250069
URL:https://nzdsa.org.nz/event/alexs-good-life/
LOCATION:Zoom\, New Zealand
CATEGORIES:Virtual Conference 2026
ATTACH;FMTTYPE=image/jpeg:https://nzdsa.org.nz/wp-content/uploads/2026/09/alexs-good-life-1.jpg
ORGANIZER;CN="New Zealand Down Syndrome Association":MAILTO:na@nzdsa.org.nz
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END:VCALENDAR