aboutus

The Angelman Network was established as a registered Charitable Trust in

New Zealand in 2011.

OUR STORY

The Angelman Network is a family/whānau driven charitable trust based in New Zealand that connects and supports those impacted by Angelman syndrome.

 

We are the only organisation in New Zealand dedicated to providing up-to-date information on Angelman Syndrome. We share this information on our website, social media sites and newsletters, and keep families connected and supported through social media, family gatherings and fundraising activities in NZ.

The Angelman Network is a Registered Charitable Trust (CC46746). In order to achieve our objectives we actively network with a range of organisations, MPs, families, professionals, specialists, and research teams - in NZ and around the world.

We are deeply appreciative of the expertise and generous support of Webster Malcolm Law, Warkworth - for their assistance in helping us update our Trust Deed in August 2020. 

OUR PRINCIPLES

1.  MĀTĀPONO / PRINCIPLES

1.1 The Trust is committed, in attaining its purposes, to:

(a) respecting and implementing the dual heritage of the partners of Te Tiriti o Waitangi (the Treaty of Waitangi);

(b) respecting the cultural diversity of people and encourage people from all nationalities to utilize the Trust’s facilities and services.

1.2  Our principles:

(a) The Angelman Network is a NZ support network with a global web presence, which aims to enhance the lives of people with Angelman Syndrome in New Zealand. We aim to be an inclusive, collaborative, and transparent organisation that operates with integrity and respect for all cultures.

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OUR PURPOSES

2.      WHĀINGA / PURPOSE

1.1   The purposes of the Trust are to apply the capital and income of the Trust to any valid charitable purpose within New Zealand and overseas; these will be selected by the Board, and must support the following charitable purposes:

(a) To connect families affected by Angelman Syndrome across New Zealand, by improving contact, information sharing and support.

(b) To provide up-to-date information on Angelman Syndrome for families and professionals; and to support the education of families, clinicians, professionals, and others involved in the care and support of those with Angelman syndrome

(c)  To raise awareness for Angelman Syndrome within the wider community, across New Zealand

(d)  To network with key support, advocacy, and research agencies, both nationally and internationally, to promote common interests and support common causes.

(e) To support and promote appropriate medical, genetic, and other specialist services in New Zealand, to meet the needs of those with Angelman syndrome, and their families.

(f)  To support and promote the collective rights of people who have Angelman syndrome, and the rights of their full-time family/whanau carers

(g) To raise funds and accrue assets to achieve these aims.

We also aim to:

  • connect NZ Angelman parents/whānau so they feel valued and supported

  • support and advocate for families so they can empower those with AS to realize their potential and aspirations through person-centred planning

  • pursue opportunities to support Angelman Syndrome research. We promote global collaboration for AS research and the Global Angelman Syndrome Registry

  • support 21st century values of inclusion and neurodiversity as specified in the Convention on the Rights of Persons with Disabilities; signed by NZ in 2007 and ratified in 2008

  • We advocate for the Right to a Voice in NZ - to support and promote the global  Communication  Revolution for non-speakers using the new language of Augmentative and Alternative Communication (AAC) made available by advances in Assistive Technology (AT)

Trustees 2021/22

The Angelman Network Trust is governed by a board of Trustees who volunteer their time and expertise to uphold the objectives

of the Trust Deed. 

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Kia ora koutou, my name is Ursula Christel and I am a founding member of The Angelman Network. I am a qualified Art and Art History teacher, and a social practice artist, with a passion for inclusion, networking, and creating cohesive communities. I have three adult sons, one of whom has Angelman Syndrome. I have been (and still am) involved in several non-profit organisations in NZ.  I really enjoy the team work and challenges of NGO governance.  

Chairperson

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Kia ora koutou, my name is Nicola Eley and I am a teacher and Deputy Principal. My husband and I live in Auckland and work together at a local primary school.  I have an adult step daughter and a family of furry feet including our chocolate labrador Milo, who comes to work with us each day.  My association with The Angelman Network is through a close friend who has a grandson with Angelman syndrome.  

Treasurer

To contact The Angelman Network: angelmannetwork@gmail.com