The Angelman Network Newsletter

Issue 13, Feb 2023 

Kia ora and welcome to another edition of Angel Chat

www.angelman.org.nz

CONTENTS:

  • Greetings and Check in

  • IAD NZ event pics

  • TEN 4 TEN 4 TEN - our IAD 2023 fundraiser

  • Rare Disease Day and RDNZ awareness month (March)

  • Peanut Butter - Forty Thieves donation

Greetings and Check in

Kia ora Angelman whanau and friends,

 

We hope all are safe and have avoided the damage and disruptions of the ongoing weather events. PLEASE check in with us if you have some specific needs, or if there are any gaps in the supports you are getting. It's important for us to know that we are reaching all our families in such stressful times.

 

On a more positive note, a group of 4 Angelman families thoroughly enjoyed a wonderful Auckland Whanau Picnic at Keith Park on the 18th Feb. It was an absolute treat !! Many, many thanks go to Angel-mum, Darcelle Bell-Ataata and her incredible team from The Pride Project. A lot of effort went into the set-up, delicious free kai (best fruit ice-cream EVER!!), the fun trike rides, and all the kids' entertainment. The angels, their siblings and friends, all had a most enjoyable time together. See pics below.

 

And a massive thank you to the Ellis family in Whangarei, for the wonderful effort to Light Up Blue for IAD!! We hope this will inspire more families to contact their local council or community groups, and get more NZ landmarks lit up for IAD 2024.

 

We are now moving towards Rare Disease Day, on the 28th Feb. The Angelman Network is a member of the RDNZ collective, which is the only umbrella group for rare disorders in New Zealand. They provide a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition. We will be doing promos to raise awareness for this lobby group, during the month of March.

 

We encourage all our families to participate by sharing the social media posts for the #GlowUpShowUp campaign. More below...

 

Aroha nui, stay well and take care.

 

Ursula Christel

Chairperson, TAN Board

angelmannetwork@gmail.com

021-1382878

IAD Auckland Whānau Picnic 

 

We are very grateful to Darcelle Bell-Ataata for organising such an amazing picnic party for IAD 2023 at Keith Park, Manurewa, on Sat 18th February.

And a massive Thank You to The Pride Project Charitable Trust for hosting the event with MSD funding. It was an awesome venue and the weather was just perfect - everyone had a blast! With so much on offer, it was truly a wonderful treat for all of the families that attended. Thank you!!

TEN 4 TEN 4 TEN Update!

 

We are very excited to see that our IAD fundraiser has passed the first $1000 mark!! - and there are still 11 months left to promote this campaign. We really, really need everyone's support to get us to the $10,000 goal.

 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. It is vital that we get this foundational work in place. The Angelman Network will be focusing on this project throughout 2023/24.

 

If each of us shared this link on special occasions, such as Mother's Day, Father's Day, Birthdays, special celebrations and anniversaries - just putting it out there and asking for a $10 donation in lieu of a gift/in support of this great cause; and perhaps even asking family, friends and colleagues to do the same - then together we can reach our goal.

 

 

Givealittle Page

Glow up and Show up is all about shining a light on the urgent need for action in the Rare Disorder NZ community. RDNZ are running this campaign from 28th Feb (Rare Disease Day) until the end of March.

 

#GlowUpShowUp       #DoRightByRare       #RareDisordersMonth

 

The Angelman Network will be involved in this campaign by sharing social media posts and running a Rare Disorder Awareness event at the Warkworth Library on Sat 25th March, 10am - 2.30pm. If you are in the area, PLEASE come and join us! The more the merrier.

 

This event will include an informative display, children activities, a photo-shoot with the temp-tattoos, and a meet-up with other families connected to various rare disorders. It's also a great opportunity to connect with other rare groups in the local community, and to get more media attention for Rare Disorders as one large collective of 300 000 voices, in Aotearoa.

More info on how you can involved, here:

https://www.raredisorders.org.nz/rare-disorders-month/get-involved/

 

If anyone in other regions would like to get involved and/or do something similar, please let me know at: angelmannetwork@gmail.com, so we can get some brochures/info packs sent out to you.

A request from Tareen Ellis (TAN Trustee)!

I need ideas please. Angelman NZ has been donated 16 bottles of the best peanut butter in the world ( my humble opinion) by Forty Thieves. What suggestions do people have on how to use them to raise funds? This came about after I sent them a picture of our Lewis wearing a branded shirt by them that says: " peanut butter is the glue that holds this body together ". I told them how Lewis is limited by what he can eat and of his love of their nut butters. I also mentioned international Angelman Day. Any ideas welcome.

Please send ideas to us via messenger on FB

or email: angelmannetwork@gmail.com

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 our fundraisers and Rare Disorders awareness month (March) - to help us 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