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 Aims:

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

  • To raise more awareness of Angelman Syndrome in NZ

  • To support and advocate for families so they can empower those with AS to realize their

      potential and aspirations through person-centred planning

  • To network nationally and internationally with organizations, specialists and  families/whānau 

      in order to access and distribute accurate and up-to-date information about AS

  • To 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

      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.