The global Angelman community
The global Angelman community is a proactive and influential collective that crosses borders and nations. Because people with AS are not able to speak, it is vital that those who can, should come together to advocate on their behalf. The Angelman Network is connected globally via our social media groups and our networks with other AS organisations around the world. We celebrate as one global community on 15th February - International Angelman Day. Together we have a louder voice; together we can achieve more.
Community in NZ
Advocacy, awareness, research and fundraising, all go hand in hand. The Angelman Network hopes to encourage families in New Zealand to help spread awareness of Angelman syndrome (and inclusion in general) – in your own local communities, social circles, and work places.
New Zealand families have held many family gatherings and successful events around the country. These have helped to build stronger networks, raise public awareness for Angelman syndrome, and raise funds for The Angelman Network. Families either organise their own gatherings or fundraising events or they participate in public events in their local community. In this way they have also been able to approach their local media to publish personal stories in order to reach the widest possible audience.
Pro-active families encourage and inspire each other to get out there and become active advocates for AS - to educate others and to promote inclusion and acceptance in our society. By being in the public eye, families can help to minimize the potential for isolation that can so easily occur when people with Angelman syndrome are misunderstood and marginalized. More info about our NZ community events is on the NZ Events page, here.
Keen to organise a family gathering?
Let us know when and where and we can send out an invitation to our database to those families in your region. You can also post a notice in our Facebook groups or we can create a Facebook Event for you. Contact us directly if you need any advice or assistance.
Keen to help fundraise?
Fundraising for The Angelman Network is a great way to gather donations for the Trust while also raising awareness and educating our local communities. It is important to be visible and to share stories about the importance of advocacy and research - research for new treatments, for communication, for new therapies, and for data relevant to policy makers.
Fundraising can be a positive and proactive way of getting our stories out there – to connect people, groups, organisations and supporters. We encourage families to think of new ways to do this. Let your child be the inspiration. Create an event that honours them. Having your child as the focus and sharing your family’s story is a powerful tool to advocate for change, for acceptance, for research and for funds to further the cause. If you wish to hold a fundraising event for The Angelman Network, we would love to assist!
The Angelman Network (TAN) can:
provide a Letter of Authority to you to proceed with your fundraiser, if required
sign up you/your team on our Givealittle fundraising site as a CHAMPION or an EVENT – this will provide/ensure automatic email receipts for tax deductible donations and is a simple and secure way to collect donations.
provide informative material – TAN brochures and flyers – that help to explain Angelman Syndrome and the objectives of The Angelman Network
advertise your event through our social networks (Facebook group/page) and via our newsletter database
send Certificates of Appreciation and a personal Thank You note, to any corporate group/organisation assisting you
That people with Angelman syndrome are:
accepted and acknowledged as unique individuals
valued as contributing members of their community
given access to a full language system (AAC) so that their
voices can be heard
NB: To be compliant with fundraising legalities in NZ everyone
must consider the following:
The individual to whom the Letter of Authority is addressed will be responsible for the event.
You will need to ensure the safety of the event (OSH). The Angelman Network cannot provide public liability insurance cover on behalf of third parties. We would suggest you liaise with your venue to obtain details of your guests’ insurance cover.
Upon completion of your event, please provide all outstanding funds to The Angelman Network as soon as possible so that we can complete receipting requirements. Please also provide us with a tally of any taxable donation receipts we need to provide to your attendees.
Please ensure that your debts are NOT incurred in the name of The Angelman Network as we will not be held responsible for any debt that we do not guarantee.
We are a registered charitable trust based in NZ. Any event that uses The Angelman Network or International Angelman Day promotion material, must be approved by our trust board first.