aboutus

The Angelman Network was established as a registered Charitable Trust in

New Zealand in 2011.

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

 

We are the only organisation in New Zealand dedicated to providing up-to-date information on Angelman Syndrome. We aim to share information on our website, social media sites and newsletters, and to 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 broad range of related and relevant 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.

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

  • We 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)

  To contact the organisation please email: angelmannetwork@gmail.com 

Our Patron

We are honoured

to have Mary-Louise

Bertram as The

Angelman Network’s patron. Mary-Louise is an expert in AAC and an international presenter for Communication and Angelman syndrome. She lives in Perth, Australia. 

Board of Trustees, 2020/21

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. 

Chairperson

Kia ora koutou, my name is Elizabeth Becker. I am a mother to three young children and my middle daughter, aged 5 years, has Angelman syndrome (del +). I was raised and currently live in the Waikato but also have whānau in Taranaki. Alongside my work as a mother I am also a doctor, with a background in clinical paediatric medicine, currently working within the space of population health medicine.

Treasurer

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.  

Secretary

Kia ora, my name is Lisa and we live in Dunedin. I am currently studying towards a Bachelor of Teaching in Early Childhood Education. I work as an education support worker and am very passionate about early intervention. I am also mum to a 7 year old angel and his 5 year old brother. 

Trustee

Kia ora, my name is Darcelle Bell-Ataata. In 2014, my son was  diagnosed with Angelman Syndrome UPD at 9 months of age. We live in South Auckland and my husband is of Tongan descent.  We have 2 other children. I’m a Graphic Creator and I work in the community of Manurewa for The Pride Project Charitable Trust. I am also a Trustee on the Wiri Licensing Trust and the Middlemore Consumer Council.  I aspire to be a voice for not only our Angels but for all parents and carers of Special Children. My hope is that I may influence and implement change and a better quality of life for our Angelman Syndrome community.   

Trustee

Kia ora, my name is Jeanne Coker. I live in Christchurch and am the proud mum of two young adults. My association with Angelman Syndrome started 15 years ago when my son 

 (then aged 5), was diagnosed with Uniparental Angelman Syndrome. Our Angelman journey has had its challenges but has been filled with unconditional love, happy memories and a lot of laughter. I work as a primary school teacher and am passionate about inspiring young tamariki to be the best that they can be. 

Trustee

Kia ora I'm Nadine and proud Mummy to my 9 year old angel, and her 7 year old sister. I have a BA in Education and Sociology and work in the IT industry as a Business Analyst. I've lived in London, Canada and Hong Kong, but we are now happily based back in my home city of Wellington. I've recently rejoined the Angelman Network as a Trustee after having previously being one for five years when my angel was younger.

Administration Manager

Kia Orana, my name is Mary Ellen Takie. I am of Rarotongan and Kiwi descent, currently residing in West Auckland. I am a qualified Social Worker and have a Bachelor of Social Practice with experience in working with at-risk youth. I have a passion for working with families and youth. I have five sons and my oldest son was diagnosed with Angelman Syndrome at the age of 3.5 years old.

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.