AUGUST 2021, ISSUE 8
BITS 'N PIECES
A MONTHLY E-NEWSLETTER FROM THE GENETIC SUPPORT NETWORK OF VICTORIA
SEPTEMBER 2021 NEWS AND UPDATES: P1 MESSAGE FROM OUR CEO P2 COMMUNITY RESOURCES TO SHARE P3 GRANTS & FUNDING P06 GSNV PRACTICAL WELLNESS EVENT- OCTOBER P16 APON( AUSTRALIAN PATIENT ORGANISATION NETWORK) ANNOUNCEMENT P18 GENOMICS IN SCHOOLS P19
COMMUNITY MESSAGES
A MESSAGE FROM MONICA FERRIE CEO
It been a challenging month following difficult month after difficult month. Extraordinary times continue and I’ve needed my son to remind me about the wise words of Samwise Gamgee “But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come and when the sun shines it'll shine out the clearer. I know now folks in those stories had lots of chances of turning back, only they didn't. They kept going because they were holding on to something. That there's some good in this world, Mr. Frodo, and it's worth fighting for.” I’m a Lord of The Rings tragic and it’s a family tradition to watch one of the trilogy on Christmas Eve. I’m looking forward to doing that this year and reflecting on the year that was. I’m with Sam – there is good in this world and it is definitely worth fighting for. We will continue to fight with and for our community, to be a force for good.
I’ve recently heard so many people say that 2021 has been a nothing year, a wasted year. Life is too short to have wasted years so I’m committed to making it count, making it stand for something and using it to launch into 2022. There are 3 months left to forge the legacy of 2021. For the GSNV, it will be about connection and support. Being there for our community, finding ways to engage, developing resources to support. We’ve reached into schools, into industry, into Government and Government Departments, reached out to researchers and health professionals as leaders, influencers, collaborators, participants, representatives, challengers and community cheerleaders. We’ve forged a platform on which to build and many of you, our community have been with us along the way. Our Bits and Pieces is a testament to your legacy over the past months and we want to thank you. Join us for our Practical Wellness activities across October and share your legacies, triumphs and stories for an upcoming “good news” edition. We have always been inspired by you and want to share that across our community and direct the sunlight to shine on us all. Stay safe and well,
Monica
“BUT IN THE END, IT'S ONLY A PASSING THING, THIS SHADOW. EVEN DARKNESS MUST PASS. A NEW DAY WILL COME AND WHEN THE SUN SHINES IT'LL SHINE OUT THE CLEARER."
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Community Resources to Share YOUNG Win more HELP VICTORIANS GET ACTIVE AND Grants HEALTHY SURVEY WEBINAR BROUGHT TO YOU BY THE INSTITUTE OF COMMUNITY DIRECTORS AUSTRALIA
Around $80 billion is given out in grants across Australia each year. Is your organisation getting its share?
This course is designed for grassroots community groups that want to find out where to find grants and how to win them. With just a bit of know-how and some newfound confidence you’ll go from a grants novice to a grants go-getter! COST OF $55 for 90 mins training https://training.communitydirectors.com.au/catalog/info/id:13 3
ITS OK TO ASK FOR HELP Crisis Heroes is a free community platform where you can offer or seek help. If you are struggling and need a hand, please reach out. It's okay to ask for help. From some extra food to a friendly online chat, hundreds have taken the brave first step and sought assistance via Crisis Heroes. If you’ve got the capacity to chat with someone lonely or isolated, or can perhaps drop off some goods as you do your groceries (in a COVID-19 safe manner), then give Crisis Heroes a go. Here's how Crisis Heroes works: 1. Visit Crisis Heroes and log in or register 2. Request or lend a hand or look to support someone already needing help To find out more information https://www.crisisheroes.com/about
WHAT WOULD SUPPORT VICTORIANS AGED 18-25 TO BETTER CONNECT, BE ACTIVE AND ENJOY FOOD THAT’S GOOD FOR THEM AND THE PLANET?
If you’re a young Victorian aged 18-25 (or a parent of kids) health promotion foundation VicHealth wants to hear your reality and your ideas to build a healthier future together. Share your experiences about being active, connected and healthy by filling out this quick survey here
https://vichealth.snapforms.com.au/form/futurehealthy-stories.
LOCKDOWNS LEAD TO SCHOOL RELATED STRESS
School lockdowns have highlighted the need for more and better mental health services for young people, according to a recent MCRI study. MCRI surveyed 267 participants aged 14 to 17 years between June and September 2020 during Victoria’s second lockdown. The study found that two in five young people experienced mental health problems and one in five had suicidal thoughts either most days or every day. MCRI researcher Dr Ali Fogarty says Australia’s mental health system has been under strain for some time and families face many barriers to seeking help. Read more at the MCRI report
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PRACTICAL WELLNESS MONTH HOSTED BY THE GSNV IN OCTOBER
CLICK ON THE PAGE TO REGISTER
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PRACTICAL WELLNESS MONTH HOSTED BY THE GSNV IN OCTOBER We miss connecting with you in person and wish to say thank you for your continued support of those living with rare and undiagnosed genetic conditions. The success of our ‘5 Days of Wellness Week’ last October has had us planning for this years event to build your practical wellness skills as individuals and community leaders. We are presenting 4 weeks of workshops, one per week in an online format. The continued sharing of resources is important to keep the conversations going about Support, so each event will be concluded with a take home resource. Details of each event below: PEER SUPPORT TRAINING presented by Cystic Fibrosis Community Care October 6th 10:00am-12:00pm ACCIDENTAL COUNSELLOR WORKSHOP October 13th & 15Th 10:00am -1:30pm presented by Suicide Programs/Calm Conversations (FULL-this option is to register your interest to join the waiting list) RIGHT TO SAFETY WORKSHOP presented by Women with Disabilities Victoria October 19th 10:00am-1:00pm DEMYSTIFYING LOSS & GRIEF WORKSHOP presented by Very Special Kids October 25th 10:00am – 12:00pm
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GENOMICS IN SCHOOLS EDUCATING THE NEXT GENERATION
THE GSNV IS EXCITED TO BRING EXTENDED LIVED EXPERIENCE OF GENOMICS INTO VICTORIAN HIGH SCHOOLS AND TO RAISE THE AWARENESS OF NEW AND EMERGING TECHNOLOGIES IN HEALTH AND SOCIETY.
WE HAVE LAUNCHED OUR PROGRAM THAT SUPPORTS THE SCIENCE AND BIOLOGY CURRICULUM, CREATING A POINT OF DIFFERENCE BY INSERTING A FOCUS ON THE “LIVED EXPERIENCE“ OF THOSE BRINGING THE DIAGNOSIS TO PATIENTS WITHIN THE GENOMICS ARENA, PROVIDING THE STUDENT WITH AN UNDERSTANDING OF THE UTILITY OF GENOMIC MEDICINE. PLEASE SHARE WITHIN YOUR NETWORKS BY DIRECTING THEM TO (HTTP://WWW.THEGENETICLINK.ORG.AU/EDUCATORS)
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THOUSANDS OF CHILDREN ARE SUFFERING AND DYING SLOWLY FROM DEMENTIA, MOST WILL DIE BEFORE THEY TURN 18, SOME IN INFANCY, AND ALL WILL DIE PREMATURELY. ONE OF THE BIGGEST PROBLEMS: NO ONE KNOWS CHILDHOOD DEMENTIA EXISTS.
IT’S TIME WE FACE IT. OUR FACE IT AWARENESS CAMPAIGN IS MAKING SURE GOVERNMENTS, RESEARCHERS, SOCIAL AND HEALTH CARE PROFESSIONALS KNOW THAT IT IS A PROBLEM WE CANNOT IGNORE. NO FAMILY SHOULD HAVE TO WATCH THEIR CHILD SUFFER AND DIE.
YOU CAN BRING AWARENESS THAT CHILDHOOD DEMENTIA DOES EXIST BY PAINTING YOUR FACE. SHARE YOUR PICTURE ON SOCIAL MEDIA ON THE 22ND OF SEPTEMBER
#FACEIT #CHILDHOODDEMENTIA WWW.CHILDHOODDEMENTIA.ORG/FACEIT
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