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January (er, February!) 2022 Edition
Kia ora koutou

Welcome to this edition of the WDSA newsletter and Happy New Year. It feels a bit late in the piece to be saying that now but we hope you all had a wonderful Christmas (probably a distant memory!) and are making the most of this hot, sunny summer.

Take a look below for the usual information, resources, events and titbits relevant to our community.

 

As always please get in touch, committee@wdsa.co.nz, if you have suggestions for this newsletter or ideas that might enable us to better support you as a community.

Ngā mihi
Selena and the WDSA Committee
My name is Laura and I am the Secretary for the Wellington Down Syndrome Association Committee. My husband and I have five children, Ellamae 13, TJ 8, Elijah forever 5, Thea (who has Down syndrome) 3 and Christopher 4 months. 

In 2020 our son Elijah passed away. He had an undiagnosed genetic condition and very high needs (couldn't walk or talk, was legally blind, tube fed, had seizures and a plethora of other medical issues). After he passed away, I was (and still am) quite lost. What I did know though, was that I had a lot of information having already spent time navigating and being apart of the disabled community. This is what lead me to join the Committee in the hope that I would be able to help other families out. I am happy to chat about my experiences with tube feeding, therapy, individualised funding and ORS applications.   

Thea is the absolute joy of our family. She is affectionately known as "the hurricane" and is forever bringing smiles to the faces of those around her wherever she goes. I believe very strongly in early intervention therapy and to date Thea has blown us with her development. 

Having been on the Committee for about six months now it is apparent that we need more connections into the adult Down syndrome community in Wellington (
please get in touch if you are an adult with Down Syndrome or the parent of one) and that to hold events and fundraisers we often need a hand from others within the community to make these a success.

Despite having recently moved to Palmerston North, I am looking forward to meeting and continuing to connect with our wonderful Wellington Down Syndrome Community.
COVID-19 Bulletin

NZDSA has published a great newsletter this week: 'COVID-19 Bulletin - Protecting Tamariki'. In it, you'll find plenty of tips and tricks about the new 'traffic light' system, or COVID-19 Protection Framework as it's formally known, with a particular focus on information useful to the Down syndrome community. Click here to get (more) informed.

The COVID-19 website remains the best source of the latest information and you can stay on top of what's happening in your local area by visiting it regularly.
***WAIRARAPA COMMITTEE REP***

We're losing our wonderful Wairarapa rep - Bridie's packing her family up and shipping out to Washington DC in a couple of months - so we're on the hunt for a volunteer with strong ties to the Wairarapa region to replace her on the WDSA committee. We meet once a month for an hour or so, most meetings are conducted online but we do have several face-to-face conversations each year. If this sounds like it could be you, email committee@wdsa.co.nz.

***DOWN SYNDROME REP***

We'd like to extend the opportunity for a person with Down syndrome to join the committee, to provide the unique first-hand perspective we're lacking. We're flexible on how this may work, if you know someone that might fit the bill in any way, shape or form email committee@wdsa.co.nz. We'd love to work together to bring this idea to life.

***TECH SUPPORT***

Do you have experience in web development or IT? We need a volunteer to help us maintain our website. This largely involves updating the current site with content, as well as ensuring it remains secure and bug-free. Time-wise, the commitment's not huge, probably an hour or two once a month. Get in touch, committee@wdsa.co.nz.
Wellington celebrates World Down Syndrome Day

Bust out your crazy socks, World Down Syndrome Day (WDSD), will be back on Monday 21 March.
It's a worldwide celebration of the extra chromosome people with Down syndrome have ('cos socks are kind of shaped like chromosomes, right?!). Help fundraise for the Wellington Down Syndrome Association by encouraging your workplaces, schools, preschools and other community groups to wear colourful, mismatched socks on the 21st and donate a gold coin to the cause. Here's a sample poster you could use.

WDSD is a global awareness day which has been officially observed by the United Nations since 2012.
The date, 21 March, signifies the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

The theme of this year's international celebration is #InclusionMeans, to empower people around the world to advocate for full inclusion in society for people with Down syndrome and disabilities. 

If you'd like to share online what inclusion means to you and your whanau, use the hashtags #InclusionMeans and #WorldDownSyndromeDay and tag us on Facebook @WDSAssn.

Closer to home, there are loads of other ways to celebrate WDSD within your local communities:

 
  • Share a book about Down syndrome with your children's preschool or kindy friends - check out the IHC Library catalogue or email a librarian for assistance (the library is currently closed under the 'red light setting' but staff are still working from home and able to assist).
  • Donate a book to your local library
  • Organise a fundraising morning tea at work or hold a 'lunchtime learning' session for your colleagues
NVISION Eye Centers - a community of surgeons, optometrist partners and others dedicated to helping people live better by seeing better - reached out last month to inform us of a guide they've published about eyesight and Down syndrome. Although they're an American organisation, it's an interesting read covering off topics like common eye issues in people with DS (as well as treatment), identifying eyesight problems in children with DS and vision care.
  • Thanks to your generous support, our online auction raised over $1,000. We'll be feeding this money back into our community in 2022. Huge thanks to the generosity of all the businesses that helped stoke our prize pool with the excellent products and services you purchased!
     
  • Congratulations to Dr Sarah Paterson-Hamlin, CEO of the UpsideDowns Trust, who has become the new Editor of NZDSA's great Chat21 publication (free for NZDSA members)
     
  • Attitude Pictures is currently casting Down For Love, a primetime television series for TVNZ 2.Down for Love will be filmed this month and will focus on people living with Down syndrome who are on a quest for romance. Interested? Email daniella@attitudepictures.com for more details
     
  • We've placed a hold on the Frances Clarke Memorial Awards for the time being. Interested in a virtual conference instead or rather we hold off until we're back at Orange? Email through your vote now
THANKS FOR READING!
The WDSA Committee is made up entirely of volunteers.
We'd love to connect with members of the community who can spare a few hours to help here and there. If that sounds like you, sign up to our Friends of the Committee Facebook group.
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