The Angelman Network is a

Registered Charitable Trust based in New Zealand

CC46746.

Disclaimer: Links to other Internet sites are for the convenience of all web-users. The Angelman Network is not responsible for the availability or content of these external sites and we do not endorse, warrant or guarantee any products, services or information that may be offered at these sites. Always contact your own medical practitioner for any medical advice.

©2018 by The Angelman Network. 

Angelman Day

Feb 15th

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

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

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.

The Purpose of International Angelman Day is to:

  • 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. 

IAD 2019

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.

IAD 2018

 

 

 

 

 

 

 

 

 

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.

 

 

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.

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.

 

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.

 

 

 

 

IAD 2013

Nation-wide theme: “Celebrating Angelman Syndrome”. The Angelman Network observed the first ever 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

A record breaking 13 Angelman-families and whanau were represented at our inaugural IAD gathering in Auckland on the 16th Feb.  12 angels 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!

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 angels, friends and siblings, 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

WELLINGTON: the Lighthouse Petone

Team Kaya organised a movie viewing at the Lighthouse Petone, which helped to spread Angelman Syndrome awareness as well as raise funds for The Angelman Network.

  • Movie– Mt Zion

  • Where– The Lighthouse Petone, 52 Beach St, Petone

  • Price– $20 per ticket

There were also raffles as well as a chance to purchase some homemade snacks for the movies. A great fundraiser! Awesome work Nadine and Team Kaya.

 

ROTORUA: Te Puna 0 Ngati Whakaue (pre-school)

Team Jhyoti held a ‘yellow’ dress-up day at Te Puna 0 Ngati Whakaue (pre-school) to raise awareness and share all about Angelman Syndrome in a fun way. Angel-mum, Courtney, chose yellow as a colour of happiness! The awareness event was on the front page of their local newspaper. Well done Courtney and Team Jhyoti!

PUKEKOHE: Pukekohe intermediate school

Team Jordan’s 12 year old cousin Kayla, organised a Mufti day at her Pukekohe intermediate school to help raise awareness about Angelman Syndrome. The whole school dressed up in blue or white and wore angel wings.  Jordan – who has Angelman Syndrome – visited the school and met all the lovely kids. Kayla gave a PowerPoint presentation at assembly, educating the students and staff about Angelman Syndrome and there was a fantastic response. Over $600 was raised! A big shout out to all of Pukekohe intermediate students and staff, and a tremendous THANK YOU to the amazing Kayla for making it happen! Thank you Sivao, and well done Team Jordan.

 

PALMERSTON NORTH: St James Catholic School

St James Catholic School acknowledged International Angelman Day in honour of Olivia, and held an Angel mufti day which raised funds and spread awareness. Kerryn did a presentation and organised a World Record Ice-cream Scooper chap to come in and

scoop ice-creams for all the kids. It was an awesome success. Well done Team Olivia!

NORTHLAND: 

This huge WEAR WINGS TO WORK awareness & fundraiser event was kicked off by TEAM CALEB (Gemma and Bevan Bradburn) in Northland, and spread like wildfire. On Friday 15th February, wings were seen in numerous unexpected workplaces around Whangarei: Pure Essence clinic, a St John’s course, Toll NZ, One Tree Point School, and a delivery truck run! It spread across the country to Whitianga’s Wharehouse and even a 20/20 cricket game in Wellington – and then went international to the UK! Well done for this great effort, Gemma and Team Caleb!! Also thanks to the Ruakaka Community Market for hosting the Team Caleb/Angelman stall at the market on Sunday; to Elaine Goldthorpe, Chris Jackson and Sandra Currie for supplying baking of Angel cupcakes and biscuits, and to Pam Weir, for supplying and organising Angel cookies for the kids to construct at the market.Team Caleb International Angelman Day collection - Thanks go to

  • Maiya &Kylee Jhaveri, 

  • kindy fundraiser, TM auctions 

  • Whitianga Club 

  • Whitianga Warehouse 

  • Toll Whangarei 

  • Gunson Mclean Accounting – workplace collection 

  • Quilt raffle & OTP School, Carter Holt LVL 

  • Tim and Lisa Angel badges 

  • Ruakaka Market , cupcakes cookies and donations 

  • Chris and Jock 

 

TRADE ME AUCTION: ANGEL FOR A DAY

4 yr old Maiya ran a cookie sale at her Kindy and a Trademe Auction; and raised $151.00

Our friend Caleb is 2 years old and has a rare condition called Angelman’s Syndrome which affects his learning and development

He suffers seizures, and carries out daily and weekly therapies, and hospital visits to support him. This can be extremely challenging

for him, his family and others with this rare condition.  On February 15th it is the first ever International Angelman’s Day where we

can raise awareness of this rare condition, promote research, educational resources and to encourage fundraising for The Angelman Network in NZ. Maiya, (my 4 year old) thought about how we could support Caleb and his friends with Angelman’s Syndrome for Angelman’s day. She wanted to ‘sell some of her toys to raise money to support Caleb and his friends’. Upon discussing this further Maiya thought some Angel dress-ups would be suitable so that someone can be an Angel for a day. Using some money from her

piggy bank Maiya chose some fairy/angel wings and an angel halo to auction for this great cause – hence this ANGEL FOR A DAY auction takes place – inspired by a 4 year old wanting to make a difference. (Maiya also listed BEADS of LOVE – a necklace she

made to raise money for this awesome cause). 100% of the auction was donated to The Angelman Network NZ to support this cause.

Rare Disease Day (RDD) – 28/29 February

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.