The Angelman Network seeks to connect people impacted by Angelman Syndrome in New Zealand and around the world.
A wide range of information related to Angelman Syndrome is available on this website, eg. informative news items, recent articles, Facebook and website links, resources, video clips, and blogs – with regular updates. We hope this active site will offer support for families, reliable information for the medical and educational professionals, and help to promote more awareness for Angelman Syndrome.
We also facilitate social gatherings and events around New Zealand; to provide support, promote friendships, educate, and fundraise.
The Angelman Network is a Registered Charitable Trust and our Charities Commission Register number is CC46746.
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Recent AS news items from New Zealand and around the world:
For those on Facebook! – Any folk connected to a child with Angelman Syndrome or have a keen connection/an interest in medical science, who are interested in chatting about research or trials for Angelman Syndrome, there is a closed fb group called Angleman Research & Trials you can request to join. Sign in, and here is the link: Angelman Research & Trials group
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BREAKING NEWS FROM F.A.S.T.!!!
click here for: CLINICAL TRIALS ANNOUNCEMENT
“The Foundation for Angelman Syndrome Therapeutics (FAST) is thrilled to report that the University of South Florida (USF) will begin to recruit participants for a new clinical trial led by Edwin Weeber, Ph.D. The Minocycline in the Treatment of Angelman Syndrome Clinical Trial will be conducted at the University of South Florida Health’s Center for Advanced Health Care, 2 Tampa General Circle, Tampa, Florida 33606. A total of twenty-four patients will be randomly selected to participate in this open label trial to determine the efficacy of Minocycline as a treatment for Angelman Syndrome.”
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NZ RARE DISEASE DAY GATHERINGS:
SOUTH ISLAND: The Angelman Network in Canterbury will be having its first gathering for the year – an opportunity to catch up and share.
Date: Saturday 25th of February from 2 – 4:30pm Venue: 28 O’Connor Pl, Burnside, Christchurch Hosted by Peter and Jeanne Coker @ their home. PH:03-358 5083 Link to MAP Bring a plate to share for afternoon tea. Please bring swimwear for a dip in the spa pool.
NORTH ISLAND: Our first Family Gathering this year, is a relaxing picnic lunch!
Date: Sunday 26th Feb, from 11am – 2pm Venue: PHAB building, 8 Auburn Street, Takapuna, Auckland Link to map: http://events.stuff.co.nz/venue/phab-youth-space-north-shore-takapunaBring your own picnic lunch and drinks – music and some snacks will be supplied. (and tea/coffee for the oldies). This venue is ideal as it is a fully fenced play area with wheelchair access, bathrooms and a kitchen. The outdoor area is spacious and we hope to have face painting, bubbles, balloons and some games on hand, to ensure that all are kept busy and entertained. There is also a large indoor area should the weather not play along on the day. Siblings, family and friends are welcome to join us!
Ursula will also share a little about her recent trip to Chicago and some thoughts about the future for our angels in NZ.
Looking forward to seeing a great turnout at both events!!
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The recent 2-page spread in Woman’s Day (New Zealand) magazine, and a letter to the Editor in response to the article - great for more awareness for Angelman Syndrome in NZ:
Response to article:
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FREE EVENT. Friday 9th March 10am-4pm, Saturday 10th March 9am-4pm, ASB Showgrounds, Greenlane, Auckland: The Big Event
The Big Event Health & Disability Expo is going to be the number one event for the disability sector in New Zealand in 2012.
- an amazing array of product and service providers
- a Celebration of all things Disability. Our focus is on what people with disabilities can do; not what they cannot do.
- a huge focus on sports and recreational activities
- meet people with disabilities from all walks of life (some famous as well) who will share with you what they have managed to achieve in their life.
- a youth focus with not only the Halberg trust demonstrating amazing activities but also a disco on the Saturday afternoon where two great bands will play!
Free entry and free parking
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