International
Angelman Day
The global Angelman Syndrome community celebrates INTERNATIONAL ANGELMAN DAY (IAD) annually on the 15th February, to raise awareness worldwide for Angelman syndrome and to raise funds for national AS organisations. The date selected is in recognition of the 15th chromosome affected, and February is international Rare Disease month.
The Angelman Network was a founding organisation that established the IAD Collective in 2012, and managed the first website from 2012 - 2023. The new website for IAD and generic IAD resources, can be found at: www.angelmanday.info
The Purpose of International Angelman Day is to:
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Raise awareness worldwide of the condition
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Mobilise people to action & encourage fundraising for the AS organisation in their country
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Promote research and educational resources in the organisation’s own country
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Remember those people with Angelman Syndrome who are no longer with us
IAD in Aotearoa NZ
IAD
Collect Data,Creat Change - IAD SIGN UP CHALLENGE!
Each year, we challenge ALL families affected by Angelman Syndrome (AS) in Aotearoa New Zealand, to sign up to the Global Angelman Syndrome Registry! Why is this important? Aotearoa NZ currently lacks a national registry for rare disorders so we don't know how many Kiwis live with Angelman syndrome.
Signing up to the Global AS Registry will give us more accurate data to ensure that people with AS in New Zealand will have access to potential treatments down the road. This global initiative also helps to drive research & inform clinical trials.
Please help us shape the future of treatment for Angelman Syndrome in Aotearoa NZ! Every person with Angelman syndrome who joins the registry, helps to pave the way for future treatments in Aotearoa NZ !!
Connecting Families, Inspiring Hope
For IAD 2025, families across the motu joined the global Angelman community to celebrate our special day in style! We had a great turnout at the Family Picnic in Warkworth, a school mufti day fundraiser, a successful fun walk, and great efforts celebrating in BLUE!! Thank you to all our wonderful families!!
IAD 2024
See new IAD website for info and resources
For IAD 2024, we encouraged all families to raise awareness about Angelman syndrome in your local community - reach out, get others involved, and have fun! Organise social gatherings with other Angelman families, hold a BLUE mufti day on 15th Feb at school or work to fundraise for TAN, light up your homes BLUE, and connect with local media to share your events.
A huge thanks to all our amazing families and whānau for your incredible efforts in shining a light on Angelman syndrome this year!
IAD 2023
Auckland IAD Picnic at Keith Park All Abilities Playground, Manukau. A fantastic Picnic generously provided by The Pride Project.
IAD 2023 - TAN presented a collaborative webinar with The Angelman Network, FAST & ASF. Two 1/2 hr sessions:
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Roadmap to a Cure 2.0 (FAST) - with Allyson Berent-Weisse and Nycole Copping
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AAC Q & A session (ASF) - with Amanda Moore and Communication specialist, Tabi Jones-Wohleber
2022
Online Campaign/Lockdown
Due to ongoing outbreaks of Omicron in NZ, families could request a free laminated AAC page ( created by the Angelman Academy) to be posted out for IAD 2022. Social media banners and posters were personalized and shared on various platforms.
An amazing celebrity Shout-out video was circulated for all the folk in NZ who have Angelman syndrome - from Nickson Clark (The Edge Breakfast team) in honour of his cousin, Jordan. Featuring tributes from Chris Parker, Sharyn Casey, Lance Savali, Buttabean, Bree and Clint ZM radio, Pirie Weepu, and Johnny Tuivas-Sheck.
2021
Family Gatherings
Families gathered in Auckland (North Island) and Christchurch (South Island)
AUCKLAND: at Glen Eden Community House, Glen Eden. A pot luck lunch, wearing blue. Playground and kitchen available.
CHRISTCHURCH: Sunday 14th Feb at 5 Tisch Place, Christchurch. Shared lunch.
2020
IAD Fundraiser & Family events
Events held in Palmerston North, Christchurch and Auckland. Many thanks to BestStart Marne (Palmerston North) - they organised a great fundraiser and Angelman awareness event with options to run/walk 5 or 10km. A family picnic was held in Christchurch, and in Auckland at Orewa Beach - with Circability providing free entertainment,
2019
Auckland Event
International Angelman Day Event, Auckland, Sat 16th Feb at Papatoetoe Primary School. The Angelman Network was very grateful to have the Hon. Carmel Sepuloni, Minister for Disability Issues, attend as guest speaker - to meet our families and share information on some positive changes coming up soon for the Disability sector. We had an excellent family turnout!
2018
IAD Family Gatherings
Family gatherings were held in Auckland at Cornwall Park, Palmerston North (Lower N Island) and Christchurch (S. Island). In Christchurch, families enjoyed time together at the Southern Centre, exploring the sensory room and enjoying the swim school pool.
2017
Family Gathering
Eleven Auckland families gathered together to enjoy the Trillian Trust FunFest held in Manakau, Auckland during the summer school holidays. The accessible location, free activities, rides and attractions on offer, made it a very special treat for our families.
2016
Auckland Event
The theme was Love & Inclusion at the IAD event held at Estuary Arts Centre, Orewa on the 14th Feb. Hermant Thacker shared his research work on adults with disabilities and family care, and Natalie Todd, Deputy Principal of Warau Valley School, spoke on the AGOSCI 2015 conference and AAC.
2015
Auckland Event
The Angelman Network had a stand at the Okura Forest Festival, North Shore, Auckland - on 14th Feb, Valentine’s Day. Our theme was 'Awareness Eyes'. The live music festival was a great backdrop for our awareness campaign. Folk could decorate a mask, learn more about AS, and make a donation.
2014
The theme was Networking for AS. 'For The Angels' team held an Enduro-Challenge at the University of Auckland Health & Fitness Centre, as a fundraiser for The Angelman Network and included a sausage sizzle. It was a fun event; a win-win for everyone.
2013
The Angelman Network observed the inaugural International Angelman Day in New Zealand on 15th February 2013. It was celebrated across the country in a variety of creative ways. An event was held at PHAB, Takapuna. 13 Angelman-families and whanau were represented.
