International Angelman Day (IAD)
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.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.
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.
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.
Family gatherings were held in the 3 main regions of NZ:
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.
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.
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,
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.
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
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!
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.
More on our 2013 celebrations around NZ, HERE
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.