Ursula and Darren are the Primary Networkers of the website and live in New Zealand: Ursula on the North Island, and Darren on the South Island.
Darren Humphries (Chair)
Hi, I am Darren and I live in Christchurch with my wife Julie, and my daughter Francesca. When my son Elijah was diagnosed with Angelman Syndrome in 2006, I worked with some families around Christchurch to establish the Canterbury Angelman Support Group. I have a vision and passion for raising awareness of Angelman Syndrome and connecting families and organisations – locally, nationally and internationally. In 2007, aged 3, Elijah died from injuries sustained from seizures. The Canterbury support group joined with the Angelman Network in 2011. I love to network, blog, read, play music, and laugh; I love to spend time with my family. By day I work as a billing analyst for an ITC company.
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Ursula Cranmer (Secretary)
Hi, I’m Ursula and I live in Auckland on the North Island of NZ. I am a busy mum but also a professional artist and teacher. I have a BA from the University of Natal (South Africa), where I majored in Fine Art/Art History, and a Dip.Ed. in Higher Education (Art/English). I also completed my first year B.Arch, at the University of Natal, Durban. I have taught Art/Art History in secondary and tertiary institutes. Since arriving in NZ in 1996, and raising my 3 sons, I have established myself as a freelance artist/art tutor/art writer, and have authored a series of Celebrate Art books on contemporary art for teachers in NZ and AU. Set design for local theatre productions, digital photography, making short films, and coordinating collaborative community projects (particularly with folk affected by disabilities), are my other creative outlets.
I have three awesome sons: My middle son Andrew is almost 16yrs, AS del +. Advocating for Angelman Syndrome in New Zealand, disseminating relevant information, and being an active participant in the quest for a cure for our angels, is what drives me, every day.
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Louise Alcock
Hi, my name is Louise. I live in Auckland with my awesome family; Neil, my hubby, Summer (7), and Kaylee (4). I’m a Jack-of-all-trades and a multi-tasker – I’ve worked in hospitality and retail, and am now a full time mum, who like all mums, is always on the go. Visiting the gym and keeping fit is currently my favourite ‘time-out’. Summer is our angel who was diagnosed when she was 4yrs old with UBE3A mutation. She is an extremely fun-loving girl who is full of new surprises for us every day, and determination like you wouldnt believe. Her relationship with her younger sister is fantastic. She is thriving every day. I’m excited about the possiblities of a great future for our angels, and am keen to offer my time and energy towards fundraising ideas and promoting more awareness for Angleman Syndrome in New Zealand.
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Jeanne Coker
Hi I’m Jeanne Coker, I live in Christchurch with my husband Peter. We have two children; Daniel aged 11 and Melissa aged 9. Daniel has Angelman Syndrome; he was diagnosed at aged 5, and has Uniparental Disomy. Daniel attends Allenvale Special School in Christchurch and is thriving under their wide range of services and expertise. He loves the computer, swimming, TV, Steve Irwin and crocodiles, all animals, shows, bananas and being the centre of attention! Daniel is non-verbal and communicates using sign and by using a Dynavox communicator. We face challenges everyday but the progress Daniel has made over the years has been amazing. He delights us with his sense of humour, his unconditional love and affection and his passion for life.
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Jonathan Winther (Johnno)
Jonathan and Sivao live in Te Atatu, Auckland, with their two sons, Jordan and Luke.
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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 03 353 5083
contact by email angelmannetwork@gmail.com
Angelman Syndrome New Zealand, Angelman new Zealand
