OUR HISTORY
The Angelman Network (TAN) was co-founded in New Zealand in 2009 by two parents of children with Angelman Syndrome - Ursula Christel (North Island), and Darren Humphries (South Island). Both had been committee members for a previous ASNZ group, that had since been dissolved.
our forst family gatherings for NZ Angelman families were held on the North and South Islands, in February 2009 in response to Rare Disease Day (RDD). In 2012, we co-founded our own International Angelman Day (15th February), and celebrated the inaugural event in 2013.
Setting up the Trust and Website
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 were impacted by Angelman Syndrome.
At that time, the internet was relatively new and most information was acquired through an active international Listserve forum/email. Given that families were struggling to keep up with day-to-day challenges and had little time to research online for resources, supports and tested advice, the vision for The Angelman Network was to collate the latest evidence-based information from reliable sources on our own website - and to keep this regularly updated. The Listserve had collated emails under specific headings/categories that had captured the more common and also the most important health issues that families were facing. The international perspectives, and the global responses from families and their specialists, were incredibly helpful for families facing similar issues.
As a resource, the intention of the TAN website was to help provide immediate access to a wide range of information for both 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 at that time, and to encourage a global network of interested participants.
The first Trust meeting was held in Auckland in 2009 when the Founding Trustees were elected. From 2010, an active fundraising group, the Action Angel team, began participating in local fun-runs around the Auckland region. Dressed in white and wearing wings, they began to fundraise and raise awareness for Angelman Syndrome via media exposure in 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.
