The Angelman Network Newsletter

Issue 12, Feb 2023 

Kia ora and welcome to another edition of Angel Chat

www.angelmanday.info

CONTENTS:

  • Greetings and Check in

  • IAD Auckland Whanau Picnic (funded) with Darcelle Bell-Ataata

  • IAD in Whangarei with Tareen Ellis

  • TEN 4 TEN 4 TEN - our IAD 2023 fundraiser

  • IAD promo resources to share on social media

  • IAD 2023 Collaborative Angelman syndrome webinar

Greetings and Check in

Kia ora Angelman families, whanau, and friends,

 

Firstly, our thoughts are with those who have been affected by the recent severe weather events. We hope our Angelman families are all safe and have avoided the terrible flooding and property damage. If anyone has been affected, see here to make sure you are getting the supports you need.

 

The Board of Trustees has been discussing our goals for 2023 and how we can support International Angelman Day in NZ. For those who may not be aware, IAD began in 2013 (I am a co-founder and manage the website and global campaigns) - and we are now celebrating the 10th Anniversary. The Angelman Network also funds and manages the IAD website. We hope you all enjoy this dedicated day, and use it as an opportunity to participate in a family gathering, spread awareness in your local community, or just enjoy a small celebration at home with your angel and share pics and your story about AS on social media. See here for more ideas!

 

Please also support the cause by sharing posts from The Angelman Network's page, including our TEN 4 TEN 4 TEN IAD fundraiser Campaign.

There are a couple of exciting developments unfolding but we really need your support and participation to help us achieve those goals. More on this below!

 

Stay well and take care.

 

Ursula Christel

Chairperson, TAN Board

angelmannetwork@gmail.com

021-1382878

IAD Auckland Whānau Picnic!! 

Keith Park, Manurewa.

18th February 12.00pm - 3.00pm

We are very grateful to Darcelle Bell-Ataata, for organising this amazing picnic party for IAD 2023.

The Pride Project Charitable Trust via MSD funding is hosting The Angelman Network's IAD family picnic in Auckland this year.

  • Food & beverages will be provided and some gift cards for Primary Carers and Siblings.

  • If the picnic is cancelled due to weather, gift cards will be couriered to your Auckland address.

If you would like to attend this whanau gathering, PLEASE click on the link below and fill out your details for catering purposes. And don't forget to wear BLUE for IAD!

 

IAD Picnic Form
 

In Whangarei, Northland the Canopy Bridge and two feature trees at the Town Basin will light up in BLUE this year, to celebrate International Angelman Day.

 

With an accompanying press release, illuminated landmarks give us an opportunity to share our stories about Angelman syndrome in the media, and reach a wider audience.

 

These Whangarei landmarks will join the global chain of landmarks around the world that light up in BLUE for IAD. All thanks to Tareen Ellis, our new TAN Secretary!

 

Do you have a local landmark that you could light up in BLUE? Click on the link below, make some enquiries, and let us know asap.

 
Light it BLUE
 

Tareen and her family (originally from South Africa) have lived in NZ for 10 years. They have two beautiful boys; their youngest who is nearly two, has Angelman Syndrome. 

 

We are thrilled to have Tareen on our board for 2023, and look forward to getting to know her and her family.

 

Tareen is based in Whangarei and would love to meet up with any families in that region, to celebrate International Angelman Day.

 

If anyone is keen to get together, please contact Tareen via Messenger on Facebook.

 

 
Facebook

TEN 4 TEN 4 TEN !

 

The purpose of International Angelman Day is to:

  • Raise awareness worldwide of the condition

  • Mobilise people to action & encourage fundraising for the AS organisation in their country

  • Promote research and educational resources in the organisation’s own country.

  • Remember those people with Angelman Syndrome who are no longer with us.

 

We are excited to launch this fundraiser as part of our IAD awareness campaign and to support our goals for 2023! We are asking everyone to donate just $10, on the 10th anniversary of IAD, to help us raise $10,000.

 

And then PLEASE share, share, share, for the rest of the year, to help us achieve our goal amount. We know budgets are tight, so the fundraiser will run all year. See link below for the short video on our donation page.

 

Givealittle Page

Use of funds

Funds will go towards establishing an Angelman syndrome registry in NZ and an AS clinic in Auckland, and to support families to access the clinics. These are our primary goals for 2023. But we will need your help and participation to accomplish these goals. Together we can create a better future for our NZ Angelman community. More on this coming soon!

IAD promo resources

Please share these IAD resources through your social media channels. Add your own story about Angelman syndrome when you share the images. These and more are available on our Facebook Page and website. If you need help adding the Photoframe to your profile pic, let us know via FB.

 

On the 15th Feb, it would be great if everyone could share a photo of their angel wearing BLUE, and use the IAD hashtags in your celebratory post!! We have a lot to be excited about on the Research front!

IAD 2023 Webinar

To commemorate IAD 2023, we have also created a collaborative, informative webinar together with FAST and the ASF that you can watch on our YouTube channel.

 

So sit back and take some time out to listen to the exciting AS research updates, and some great ideas for your child's communication journey using AAC.

 
IAD webinar

Keep in Touch

Join us on social media

 

Please join us on social media to stay updated on our news and on important national and international developments and events.

 

You can also help us reach more New Zealanders by sharing our posts about International Angelman Day - and spread more awareness about Angelman syndrome.

 
Social media

Did you know that The Angelman Network (CC46746) is a registered Charity in NZ?

You can help to support the work that we do, by contributing a donation to our Givealittle Page here.

Or make a direct bank transfer to:

The Angelman Network Trust - ANZ Bank  06-0817-0352270-00

All donations are gratefully received.

 

angelmannetwork@gmail.com

021-1382878

Share on social media

Share on Facebook

www.angelman.org.nz  
This email was created with Wix.‌ Discover More