Bits and Pieces December 2018

From the Team

It feels amazing to be thinking about a Christmas message so soon after the last one, but then it has been a whole year. It just doesn’t feel like it, does it?!

As you know I’m a huge fan of the power of reflection and am committed to reflection and evaluation as standard practice. The other side of reflection for me is about the future – looking forward with hope and optimism.

Each year, I make a conscious choice to embrace the next year with hope, to invite it to send challenges and be grateful to have another year to plan for.  The Daily Stoic is a book I sometimes refer to and there’s a quote I like to remind myself of when I review a year and plan the next:

“While you don’t control external events, you retain the ability to decide how you respond to those events. You control what every external event means to you personally.”

Just because I don’t control the events doesn’t mean that I’m not working to try and influence them, to pre-empt them or to plan for them. Throughout a year, I think it’s impossible to get by without feeling out of control at some time, sometimes things happen quickly or one on top of the other.  It’s at these times where it’s so important to realise that there is no personal component, it’s just how it is at the time. I try to ensure that external events are experienced through a planned lens or a standard principle or value lens or an opportunistic lens. It puts me closer to being in the driver’s seat or even if I’m not, it at least feels like that I’m close to it and I can keep striving. 

I’m so excited about 2019, the GSNV will seek to implement many things that are in our control and position them so they are of service to you.
In 2019, we will support and strengthen the support sector by listening, participating, engaging and delivering activities such as:

-    Launching our InFocus series – a series of focussed facilitated discussions around issues identified by our Support Groups, we’ll tackle issues such as ageing and mental health and also cross condition functional areas such as neurological disorders to inform our advocacy, our support and our priorities.  
-    Introducing a bootcamp for grant writing and putting together funding applications, bringing people together with an expert to develop collaborative grant submissions and improve the sector skills in this area.
-    Expanding our lived experience understanding to include living with conditions, supporting conditions through support groups and other key areas
-    Delivering capacity building in governance and peer support
-    Continuing to support GSNV members with volunteers and Master of Genetic Counselling access
-    Advocating for support to be included as an indispensable component of the health and wellbeing system
-    Collaborating with state and national key partners to influence practice and policy at a national and state level
-    Launching the Genetic Link, a credible and comprehensive resource hub
-    And so much more

Bring on the year ahead!  

We all, at the GSNV, wish you a peaceful and joyful Christmas and a New Year where you feel ready for the coming year, with all it will bring. Know that we are looking forward to sharing a year of advances, of positive change, of sharing and growing with you all.

Peace and Joy,

Monica, CEO


Inclusion in Practice: An Innovative Education Conference

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

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
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.

Results will be published in January Bits n Pieces!

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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