The Angelman Network was established in New Zealand in April 2009; co-founded by Darren Humphries and Ursula Cranmer. It was their vision to connect families, friends, carers and professionals, whose lives are impacted by Angelman Syndrome in New Zealand and around the world. From early 2009, The Angelman Network existed only online, as Darren and Ursula worked together via phone calls and the internet, to discuss and establish their vision.
By collating up-to-date information from reliable sources on an active website, they hoped to provide immediate access to a wide range of relevant information – not to provide all the answers, but to encourage a network of interested participants.
The first meeting of The Angelman Network Trust, was held at the Cranmer’s home in Auckland at the end of 2009. This inaugural gathering consisted of families who were interested in becoming actively involved to help form the Network in a more concrete way. Ursula and Rowan Cranmer, Darren and Julie Humphries, Jonathan and Sivao Winther, and Louise and Neil Alcock were present. The Trustees were drawn from this pool of inspired folk. Together with Regional Support Groups and Fundraiser Groups, The Angelman Network hopes to grow the vision of supporting AS families in NZ, and connecting them with those from around the world.
The first social gatherings were held in 2010 – on both the North and South Islands (NZ) – in response to World Rare Disease Day. Ursula formed a keen fundraising group called Angel Action, which began participating in local fun-runs in 2011 – dressed in white, with wings – to help raise awareness of Angelman Syndrome in New Zealand communities.
The Angelman Network became a Registered Charitable Trust on 4th of May 2011, with the Ministry of Economic Development issuing the Certificate of the Incorporation of its Board. In July 2011, we were approved as a registered Charity with the Charities commission - CC46746.
The Angelman Network would like to acknowledge the generous assistance and legal advice provided by Suzy Garnett and Shannon Mony from the Christchurch Office of
‘The Angelman Network is also on facebook. ‘Like’ us at: The Angelman Network (non-profit organisation)
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Mission Statement
“Connecting those affected by Angelman Syndrome”
We do this by
- Accessing and distributing accurate information about Angelman Syndrome sourced locally and internationally
- Helping other NZ Angelman parents/guardians/care givers and families to be connected and to feel valued and supported
- Raising awareness of Angelman Syndrome in New Zealand among clinicians, therapists, schools, agencies and the community
- Pursuing opportunities to support networking and research, related to Angelman Syndrome.
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If you live in New Zealand and are in need of support or would like to be connected to other Angelman families in your area, please contact
Ursula Cranmer (North Island NZ) Ph: 09 426 2313
Louise Alcock (Auckland) Ph: 09 428 3557
Jonathan Winther (Auckland) Ph: 09 813 5194
Darren Humphries (South Island NZ) Ph: 03 387 0036
Jeanne Coker (Christchurch) Ph 03 358 0583
or contact us by email at: angelmannetwork@gmail.
