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 served as committee members for a previous ASNZ group, that had since been dissolved.
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 for TAN, raising awareness for Angelman Syndrome via media exposure in local newspaper articles.
THE TAN BOARD
In November 2009, the first board meeting with the founding trustees was held in person in Auckland. The Angelman Network acknowledges the generous assistance and legal advice for the Trust Deed, provided pro bono by Suzy Garnett and Shannon Mony from the Christchurch Office of Duncan Cotterill Lawyers.
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 registered as a Charity with the Charities commission (CC46746). In 2012, TAN co-founded International Angelman Day (15th February), celebrating the inaugural event with families and whanau, in Auckland in 2013.
The Website Vision
The Angelman Network website was set up in 2009 to support families in New Zealand and around the world, by connecting a global community of families, carers, friends, and professionals impacted by Angelman Syndrome. At the time, online information on this rare disorder was scarce and primarily based on the medical model, offering little practical help for daily challenges.
Families relied on an international Listserve, where emails were grouped by topic, sharing real-life solutions and advice. These global insights proved invaluable for others facing similar issues.
To make this information more accessible, The Angelman Network aimed to collect and share more practical, evidence-based resources, on a regularly updated website. The goal wasn’t to provide all the answers, but to offer a more holistic, inclusive, user-friendly resource and to foster a collaborative global community. This placed us in the ideal position to facilitate the founding of International Angelman Day during 2012.
Today, with larger AS organisations offering extensive libraries of resources, we now focus on delivering an Aotearoa New Zealand-specific website tailored to local families' needs.
