Bits and Pieces January 2019

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
  • Ageing
  • Mental Wellness
  • Neurological Disorders
  • Muscular/Skeletal Disorders
  • Pain
  • Transition
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.

Warm regards,

Monica, CEO


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
Time: TBC
Venue: Murdoch Children’s Research Institute, Melbourne

To RSVP for the Information Day and support group meeting, email

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

On Valentine’s Day weekend, Sunday 17 February 2019, put the hilarity in charity with hundreds of other Cupid’s runners taking to the streets in celebration of their fundraising for the Children’s Tumour Foundation.

Advocacy Sector Conversation 2019 Forum 1 Thu, 14 Feb 2019

Cultural Diversity Week - 'Proud to belong'
16 - 24 March 2019

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



Anyone can become a member of the GSNV, and we'd love to have you on board too. Our current members include:
  • support groups
  • individuals and families impacted by genetic conditions
  • health professionals
  • students
  • interested individuals
  • members of the community
The membership fees are used to fund the GSNV Small Grants program that supports the vital work of support groups who are often under resourced and in need of a helping hand.

  • Keeps members informed and updated
  • Includes research, resources, services, and policy updates
  • The GSNV runs peer support training every year, and it is free for financial members
  • The GSNV assists with facilitated support group training
  • Support with setting up, incorporating and developing governance
  • Volunteer support and access for projects
  • Accessing resources

Find out more here.
If you would like to be featured in our Bits n Pieces newsletter and you have an event, news story, or resource you would like to share, please email 
•Early Bird deadline: 1 March 2019


The KnowledgeBase is a part of RCA’s wider Patient Support Program aimed at providing patients with a centre of knowledge, guidance, advice and hope. It is a collection of invaluable resources including a Rare Cancer Directory and a list of hospitals that have Cancer Centres. You will also find a list of Multi-disciplinary Teams and clinicians that have a special interest in specific rare cancers.

Down Syndrome Victoria will have a selection of workshops coming up for parents, carers and people with Down syndrome covering topics such as relationships and dating, sexuality and adulthood, parenting and positive behaviour management. View training calendar here


Pediatrics Supporting Parents 

Pediatricians partnering with parents to promote social and emotional development.
Improved NDIS planning for people with complex support needs

NEW Medical Research Funding

Functional Genomics in Gene Discovery and Clinical Practice

Australian children with suspected mitochondrial disease (mito) will have the best possible opportunity to achieve a diagnosis, thanks to this project. Professor Thorburn’s work will underpin ongoing sustainable provision of genomic and functional genomic testing.

Building a National Clinic Database for Patients with Mito to Provide a Future for Precision Medicine

Professor Sue will lead clinical and public health teams in designing the first custom-built, secure national clinical database for adult patients. The database will assist in the assessment of new treatments and preventative strategies, and will help to improve the care and treatment of patients.

NEW Education Project

Maybe it’s Mito

One of the biggest challenges facing mito patients is finding a GP who recognises the signs of mito and who understand the disease in order to correctly manage them. By educating GPs the project aims to help undiagnosed patients get referrals to specialists earlier and improve symptom management.

The GSNV Wants to Know... About Mental Health and Wellbeing

Identifying genetic risk has been seen as a beneficial tool in anticipating possible decline in mental health and an increase in distress among patients. Emotional vulnerability and low mental health can occur from the fear negative of consequences, such as being unable to cope with knowledge of their “genetic fate.”

Empirical studies of beliefs about genetic testing suggest tests are likely to be embraced widely, but studies lack certainty of their conclusions, and indicating a need for further research with more representative samples. Despite well-documented fears of negative consequences from testing, such as insurance or employment discrimination, no studies have examined the extent of the effect on mental health and wellbeing. More info here and here.

1. Whether your specific anxieties and concerns were addressed in your genetic health appointment(s)? (e.g. regarding perception of risk or history of depression) 100% said no, 0% said yes

2.Do you feel physical and mental health should be addressed together or kept separate? 100% said addressed together, 0% said kept separate 

3. Where are you most likely to find follow up mental health support? Email us!

Want to participate in the next GSNV Poll?
Like our Facebook page here


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Genetic Support Network of Victoria · Royal Children's Hospital · Murdoch Childrens Research Institute 50 Flemington Road · Parkville, VIC 3052 · Australia

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