TAN Newsletter

Issue 17, January 2024

www.angelman.org.nz

CONTENTS:

  • Greetings & update

  • International Angelman Day 2024

  • 'Light it Blue' for Angelman syndrome

  • TAN Givealittle page

Greetings & update

Kia ora Angelman whanau and friends,

 

Greetings and good wishes for this great New Year! We hope you have all had an enjoyable holiday season with time to take some breaks from caregiving, and to recharge your own batteries. Unfortunately, Covid is doing the rounds again - and with schools starting soon, its probably a good time to go through your family's Covid plan again. Check up on boosters, pain meds, and supplements, keep some frozen meals in stock, and reconnect with family and neighbours, to ensure some outside support, should you need it.

 

Last year we celebrated the 10th anniversary of International Angelman Day, which was a huge milestone for raising global awareness!! As a founding organization of IAD, The Angelman Network managed this global event for the past 10 years. At our 2023 AGM, trustees felt it was time to pass on this stewardship role to another country in the IAD collective, so that we can focus on our national goals.

 

We are thrilled to announce that the Angelman Syndrome Foundation (USA) has stepped forward and will manage this event for the next 3 years. There is also a new, updated IAD website full of excellent resources!! So PLEASE all get behind raising awareness for Angelman Syndrome in your own local community, and fundraise for The Angelman Network!

 

To find out more about the work we do in the background on behalf of all those impacted by Angelman syndrome in NZ, please see our 2023 Annual Report here.

 

There is always a lot happening over February (IAD and Rare Disease Day) and March (Rare Disorders month in NZ), so don't forget to follow our FB page to keep up with announcements and regular IAD updates.

 

Aroha nui,

 

Ursula Christel

Chairperson, TAN Board

angelmannetwork@gmail.com

021-1382878

International Angelman Day 2024

We are so excited about IAD this year as we celebrate the launch of the new International Angelman Day website, brimming with information, ideas and resources for all families to access. Check it out, here: www.angelmanday.info

 

This special day is celebrated by families all around the world and is a great opportunity for EVERYONE to participate! Please join us as we raise greater awareness for Angelman syndrome across the whole of New Zealand. We encourage all families to make it fun! - get together locally for social gatherings, hold a BLUE mufti day at school/work on 15th Feb to help raise funds for TAN, light up your homes BLUE, and approach local media to write articles about your activities, events or fundraisers.

 

Check out our website here, to see how families in NZ have celebrated IAD over the past 10 years.

 

IAD Resources for social media

·       Go to the IAD website Resource page to access generic Canva templates, created for IAD. Make sure you customize these before posting and please reference The Angelman Network as our national NZ Angelman organisation. Contact us if you need help with this.

·       When posting on social media, please use hashtags #internationalangelmanday #angelmanday2024

 

In February, The Angelman Network will also be sharing informative daily posts on our official FB page, which we want to encourage everyone to 'like' - and then to share, share, and share widely - for the whole month of February!! We can all help raise awareness on behalf of our loved ones with AS who cannot speak for themselves. Together, we have a stronger voice.

 

 

 Don’t forget to Light It Blue

 

We would love to see more local landmarks in NZ, lit up in BLUE for IAD 2024!! Think of some unique ways you help to make this happen in your city or town. Every effort, no matter how big or small, will help raise awareness for IAD 2024.

·       REQUEST: See the Light It Blue Toolkit for ideas and for templates to write formal letters of request to key persons in your local region. Refer to The Angelman Network, as NZ's national AS organisation.

·       MEDIA: When you have approval for the lighting, don’t forget to use the press release template in the Light It Blue Toolkit to alert local and national media.

·       SHARE: If you know of a building, landmark or piece of architecture lighting up for IAD, please add the locations to the official IAD thread on Facebook.

·       RECORD! – make sure you get some great pics or video footage of the landmark lit up in BLUE. Share this on social media using the hashtags #internationalangelmanday #angelmanday2024

 

TAN Givealittle Fundraiser Page

All funds raised on International Angelman Day 2024, will go directly towards our primary cause - to improve the lives of those impacted by Angelman syndrome in NZ.

 

Our NZ families need:

  • an Angelman clinic in Auckland

  • a NZ Angelman registry to collect national data

  • support for families to access the clinics.

These goals will benefit ALL our families in NZ. We can achieve these if we work together as a team; everyone can help to promote and share this cause.

 
TAN Givealittle

Keep in Touch

Join us on social media

 

Follow our news on important national and international developments and events - and join our various private FB groups to become part of our online Angelman community.

 

You can also help us spread more awareness about Angelman syndrome by sharing our posts and our Givealittle fundraiser page.

 

We welcome any feedback, questions or support requests, so please get in touch.

 
Social media

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

You can help to support our cause, 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

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