"...the vision was to collate the latest evidence-based information from reliable sources, on a website that would be regularly updated."
The Angelman Network (TAN) was co-founded in New Zealand in 2009 by two parents of children with Angelman Syndrome - Ursula Christel from the North Island, and Darren Humphries from the South Island. The first social gatherings for NZ Angelman families were held on both the North and South Islands, in February 2009, in response to Rare Disease Day (RDD)
The Angelman Network set out to support families in NZ by connecting all interested parties in a global online network - families, friends, carers and professionals, whose lives are impacted by Angelman Syndrome.
At that time, the internet was still relatively new and most relevant information for families was acquired through an active online email forum. Given that families were often struggling to keep up with day-to-day challenges and had very little spare time to research online for current resources, supports and tested advice, the vision for us was to collate the latest evidence-based information from reliable sources, on our website - and to keep this regularly updated.
As a resource, the website would help to provide immediate access to a wide range of relevant information for families and professionals worldwide. Not necessarily to provide all the answers and specialist information, but to share a fresh perspective on Angelman Syndrome based on more current information, and to encourage a global network of interested participants.
The first Trust meeting was held in Auckland at the end of 2009 when the Founding Trustees were elected. From 2010, an active fundraising group called Action Angel began participating in local fun-runs around the Auckland region. Dressed in white and wearing white wings, they began to fundraise and raise awareness for Angelman Syndrome via media exposure in numerous local newspaper articles. On 4th of May 2011 the Ministry of Economic Development issued the Certificate of the Incorporation of The Angelman Network and in July 2011 we were approved as a registered Charity with the Charities commission (CC46746).
The Angelman Network acknowledges the generous assistance and legal advice provided by Suzy Garnett and Shannon Mony from the Christchurch Office of Duncan Cotterill Lawyers.