The GSNV Monthly E-Newsletter August 2021

AUGUST 2021, ISSUE 8

BITS 'N PIECES

A MONTHLY E-NEWSLETTER FROM THE GENETIC SUPPORT NETWORK OF VICTORIA

AUGUST 2021 NEWS AND UPDATES:

P1 MESSAGE FROM OUR CEO

P2 SPOTLIGHT ON GASTROSCHISIS AWARENESS P3 GRANTS & FUNDING P09 GSNV MID- YEAR REVIEW P17 PARALYMPICS 2021 P18 GSNV RESEARCH RECRUITMENT P19 COMMUNITY MESSAGES

A MESSAGE FROM MONICA FERRIE CEO I’ve shared my favourite quote with you before – “Even the darkest night will end and the sun will rise”, from Les Miserables, but it’s challenging when the sun keeps rising on a new day that looks a lot like the day before!

I’m one of the really lucky ones, managing to escape into a totally different time and place in outback Western Australia recently for a trip through the Kimberley. Paying my dues with a two week quarantine in Perth, I headed for sunshine and a different kind of isolation – no phone or internet reception.

What a joy and privilege to switch off from the world for a little while. The Kimberley is such a special region, walking through beautiful places more a million years old, following in the footsteps of dinosaurs and re-connecting to nature and our wide brown land.

It’s so humbling to stand in an ancient place and to wonder what the rocks and ground have seen, about who’s been there before me and know that it will be there for eternity. For me, a reminder of my part, my moment in something so much more substantial and vast than just me and a reaffirmation to ‘live’ and contribute while I am here, no matter what the times bring.I’m excited to share this month how the GSNV has been living and contributing in 2021 through our mid-year review.

We strenuously hold ourselves to account in our actions and our contribution with and for our community and we welcome your feedback.

The GSNV will host one major event in coming months – our 2021 wellness week which we will spread out over a month so look for the survey seeking your input about what you would like to see and as always, please reach out if we can be of service. A reminder as well, if you have questions regarding COVID-19 vaccination please don’t hesitate to email them through and we will seek expert opinion from those who know.

I look forward to a time where we can catch up over coffee and share our experiences, knowledge and support face to face.

Stay safe and well.

Monica

EVEN THE DARKEST NIGHT WILL END AND THE SUN WILL RISE”, FROM LES MISERABLES, BUT IT’S CHALLENGING WHEN THE SUN KEEPS RISING ON A NEW DAY THAT LOOKS A LOT LIKE THE DAY BEFORE! "

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Spotlight on Gastroschisis Awareness

Green Smoothie Day fundraiser With thanks to Sarah Stephenson and Wilson Homes The GSNV is excited to spotlight the spectacular fundraising work of Sarah Stephenson, raising funds and awareness at her Green Smoothie day. In association with Wilson Homes, the event brought in a total of $3,700 to support the work of the GSNV. Supporters donned green at the event, with the best dressed award going to Sam Plaschke!

Gastroschisis is an abdominal birth defect condition requiring surgical and medical intervention early in life, and the potential for ongoing and severe digestive and oesphogeal function issues into adulthood. This is a cause to which the Stephenson family is personally affected by, with their son Ollie.

The underlying causes of Gastroschisis, and ongoing complications of the condition and accompanying medical interventions, are not well understood. The event was organised in the hopes of raising awareness of Gastroschisis in the community and much needed funds towards further Gastroschisis research. The GSNV is greatly appreciative of the excellent work of Sarah Stephenson and all those who donned fabulous looks for the event! https://averysangels.org/gastros chisis-awareness-day-2020/

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The GSNV mid-year review 2021

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LivedX Consultations Focus Groups Each month, CYDA is facilitating paid LivedX consultation focus groups for young people with disability (ages 15-25) about what an ideal future looks like for them and how CYDA might advocate for that future.

LivedX means lived experience and also lived expertise - at CYDA we champion LivedX in everything we do. We want to make sure the government does too!

Right now, the June Focus Group Expressions of Interest are open! You can select to attend Focus Groups on dates and topics that suit you (you can express interest for more than one).

This is a PAID opportunity. All participants will be reimbursed $75.00 (via giftcard) for their time and insights, and sharing their LivedX. The LivedX focus groups will be facilitated by young people with disability, and will inform policy and decision makers!

Scan the QR code to access the expression of interest form

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Griffith University Study for Young Carers We're currently working with Griffith University on a research project involving an examination of the extent of, caring roles of, and support for, young carers in Australia and psycho-social disability and risk-taking behaviours of young carers in Australia.

If you're a carer aged 18-24 and interested in participating in an online interview, please contact Griffith Researchers Sara or Maddy. s.mcmillan@grifffith.edu.au m.slattery@griffith.edu.au

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