From the Team
Thank you for all our support in 2018, we have had a really busy and rewarding year at the GSNV and will be working hard in 2019 to make a real difference in the lives of people with genetic conditions and those who support them. Thank you for all you do in this area too, together we make a stronger team.
Now, I know you know that I’m a mad planner and love to find time for reflection. It’s absolutely that time of year for me. It’s something I love and I’m a New Year’s resolution girl from way back! That statement that if it’s not written down it’s a dream not a goal has driven me for years and coupled with the amazing words of Marianne Williamson drives me to be more and do more.
“Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our light, not our darkness that most frightens us.
We ask ourselves,
‘Who am I to be brilliant, gorgeous, talented, fabulous?’
Actually, who are you not to be?
Your playing small does not serve the world.
There is nothing enlightened about shrinking so that other people won’t feel insecure around you.
We are all meant to shine, as children do.
It’s not just in some of us; it’s in everyone.
And as we let our own light shine, we unconsciously give other people permission to do the same.
As we are liberated from our own fear, our presence automatically liberates others.” - Marianne Williamson
It’s with this in mind that we have planned and will go forward in 2019.
2019 – The Year Ahead
In 2019, we are hoping to again present our work plan to your teams and gather feedback on our plan and impact and your view on how we could be of even greater support. In the meantime, here is a brief description of our priorities in 2019.
A key focus will remain strengthening the capacity of individuals and the support sector to support individuals, respond and represent.
Our key themes to achieve this will be:
Increasing Understanding – A review of who makes up the support sector, where it begins, how it functions, where and how we collectively represent
Capacity Building – Governance, Collaborative Grant Writing, Peer Support, NDIS and Mental Wellness
Networking and Collaboration – Our calendar of dates will be released in January
o Rare Disease Day – 28th February – Save the Date
o Strengthening the Support Sector - August
o A Year in Review - November
o InFocus Series – Held at Parkville, Monash, Austin, Deakin Geelong, RMH and a Community Health Service
- Mental Wellness
- Neurological Disorders
- Muscular/Skeletal Disorders
Continue to seek opportunities for national collaboration to provide a national voice.
Genetic Link – our portal will be ready on Rare Disease Day for greater access to resources and information
- Margaret Sahhar Small Grant
- Supporting projects for Support Group through volunteers
- Genomics in Practice Masters student projects
- Mentoring and Buddy Program for Boards and Committees
In 2019 GSNV will advocate for:
• Support as an indispensable component of an inclusive health and well-being system jointly considered in practice, planning and policy development
• Access and equity for all – of information, of expertise, of care, of consideration, in research, in environment and in all things
• Recognition and action to build mental strength for people with genetic conditions and those who support them
• The Importance and recognition of identity and individuality in care, decision making and support – Differences are of value
• The right to Knowledge, Education and Information for decision making and choice
• A collaborative approach from State and National organisations
We have lots of other exciting things on our agenda including our Lived Experience Series and Genomics in Schools program to mention a couple.
Hope you had a wonderful Christmas and a peaceful, restful New Year. I hope you find some time for a break and refresh and renew.
Looking forward to shining with you in 2019.
Inclusion in Practice: An Innovative Education Conference February 25th 2019
It's not too early to start planning Rare Disease Day 2019! More info here
A Paediatric Mito Information Day
Date: Saturday 2 February 2018
Venue: Murdoch Children’s Research Institute, Melbourne
To RSVP for the Information Day and support group meeting, email email@example.com
Pain Revolution Rural Outreach Ride 2019
Taking over Tasmania for a 700km ride between Devonport and Hobart, 16-23 March, 2019.
March 5th, 2019
VCOSS & NFP Law Governance Training - Melbourne
In the media
'Of course it's not ethical': shock at gene-edited baby claims
Click here to contribute!
AllPlay Learn Parent Survey: How inclusive are education settings in Victoria for children with developmental challenges & disabilities?
MyGeneTeam Now Offering Genetic Counseling Services to Physicians and Patients
How the genome-edited babies revelation will affect research
How DNA Companies Like Ancestry And 23andMe Are Using Your Genetic Data