The global Angelman Syndrome community celebrates INTERNATIONAL ANGELMAN DAY (IAD) annually on the 15th February.

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The official website for IAD can be found at: www.angelmanday.info

International Angelman Day (IAD) is observed annually on the 15th February, primarily to raise awareness worldwide for Angelman syndrome. The date selected is in recognition of the 15th chromosome affected, and February is international Rare Disease month.

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The Purpose of International Angelman Day is to:

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• Raise awareness worldwide of the condition

• Mobilise people to action & encourage fundraising for the individual organisation in their country

• Promote research and educational resources in the organisation’s own country

• Remember those people with Angelman Syndrome who are no longer with us

 

The Angelman Network's inaugural NZ event was held on 15th February 2013. The Angelman Network is committed to working together with the global collective of AS organisations from all around the world – to support each other and to do our

bit to raise awareness for AS in New Zealand. It is very encouraging and empowering to feel connected to so many families all around the world as we unite to commemorate this special day, each year. 

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                                                                             IAD 2020

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IAD 2019

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International Angelman Day Event, Auckland, Saturday 16th

Feb 2019. The Angelman Network was very grateful to have

the Minister for Disability Issues, the Hon. Carmel Sepuloni,

join us - to meet our families, share her words of support,

and to fill us in with some positive changes in the Disability

sector that we will be able to access in the near future.

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IAD 2018

Family gatherings were held in the 3 main regions of NZ:

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• Auckland (North Island)

• Palmerston North (Lower N Island/near Wellington)

• Christchurch (South Island)

 

It was the Christchurch families' turn to have a funded IAD event,

and they enjoyed spending time together at the Southern Centre

exploring the sensory room and enjoying the swim school pool. 

 

 

 

 

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IAD 2017

11 Auckland families gathered at the Vodafone Events Centre

in Manakau, for the Trillian Trust FunFest held during the

summer school holidays. We were invited to attend the

invitational day for children with special needs and their

families. The activities, rides and attractions on offer, made

it a very special treat for our families.

 

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IAD 2016

The theme was Love & Inclusion. We had a great turnout in

Orewa on the 14th February with 8 Angelman-families and

their extended families, carers and supporters. Hermant

Thacker joined us and shared his research work and Natalie

Todd spoke on the AGOSCI 2015 conference. Our nation-wide

creative Colouring Competition ran until Rare Disease Day,

29th February.

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IAD 2015

The Angelman Network had a stand at the Okura Forest Festival,

Auckland, on 14th February, Valentine’s Day. The live music

festival was a super backdrop for our awareness campaign. Our

theme was 'Awareness Eyes'. Many local visitors dropped by and

participated at our creative ‘interactive’ stand where folk could

decorate masks, learn more about AS, and make a donation.

 

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IAD 2014

The theme was 'Networking for AS'. The month of February

was spent networking with medical specialists and scientists

in NZ, as well as distributing our brochures to medical centres

and our NZ families. The Enduro-Challenge in Auckland was

organised by 'For The Angels' team as a fundraiser for The

Angelman Network.  Thank you to all those who came along

to support us. It was a fun event; a win-win for everyone who

participated.

 

 

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IAD 2013

Nation-wide theme: “Celebrating Angelman Syndrome”. 

The Angelman Network observed the inaugural International

Angelman Day in New Zealand on 15th February 2013  with

outstanding success. It was celebrated across the country in a

variety of creative ways: – to raise awareness and much needed

funds for our young organisation. 

 

AUCKLAND: PHAB building, Takapuna

13 Angelman-families and whanau were represented at our 

inaugural IAD gathering in Auckland on the 16th Feb. 12 children

with AS were present with a large crowd of families, friends and

support persons. It was a memorable event, with a special

artwork to commemorate this wonderful day!

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We were privileged to have Nickson Clarke as our MC for the event, and outstanding music from our impromptu ‘Angel band' and singers from out West. The Jumping castle hired from BLAST was wonderful fun for everyone and the shade awnings (loaned and rigged by the Fransen family) were essential in the February sunshine. We were able to mix & mingle while enjoying ice blocks, candy floss, sausage sizzle, watermelons, waffles & cream. The opening prayer, flag-raising ceremony and national anthem, added special moments to this Day of Observance. We had some generous sponsorship from several Auckland businesses – PAKnSAVE (Silverdale), Countdown (Silverdale), Golden Malted (waffles) and BCS Group.  We are so grateful for their support and for all those volunteers and talented singers & musicians who helped make the day such a success.

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More on our 2013 celebrations around NZ, HERE

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Rare Disease Day (RDD) – 28/29 February

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Before we had our own international day, The Angelman Network celebrated Rare

Disease Day together with groups and families in NZ, affected by other Rare

Conditions/Diseases. We still support RDD and recognise the month of February as

a time to join forces and raise awareness for all rare conditions. We all face similar

challenges with access to funding, appropriate medications, and barriers in our

communities. On Rare Disease Day, funds are usually raised through a gold coin

donation to wear mufti to work / school on 28 / 29th February. 

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