Bits and Pieces April 2019

From the Team

Let me first wish you all a very happy Easter. I hope you get to take a break and spend some time with your precious loved ones over the coming week. Be safe and well.
As you know from previous issues, the GSNV has established our work program for the year and are well underway.  We are working hard to achieve our vision of a Victoria where everyone can flourish.  A key contributor to the potential of all Victorians being able to flourish is our support sector. Our support groups, communities and individuals who tirelessly support people with genetic conditions along all stages of their journey.

We take our role at the GSNV very seriously as being the organisation that stands in support of all those supporters. It is a privilege to hear your stories and support your passions.  

As the genomics juggernaut continues its path in improved and higher rates of diagnosis and targeted and advanced treatments we can expect rates to rise and the pressure on support networks to rise – under the sheer weight of numbers, changing ages of diagnosis, communities needing information and understanding and for reasons we haven’t even become aware of yet.

In anticipation of the downstream effects, the GSNV will conduct two very special events in 2018.

Mental Health First Aid
This program will be conducted over two days and help people develop the skills and knowledge to offer initial support to people who are developing a mental health problem, experiencing a worsening of an existing mental health problem or a mental health crisis. We will cover the signs and symptoms of common and disabling mental health problems, how to provide initial help and how and where to get professional help as well as first aid in a crisis situation. This course will be run in Melbourne in May however please let us know if you would like us to bring the course to your region.  More details will be available shortly.

Strengthening the Support Sector Workshop
This workshop series will commence in Melbourne and travel into rural and regional Victoria as we seek to understand the impact of increasing numbers of individuals with genetic conditions on our community support infrastructure and networks, support groups and volunteers.

Time is of the essence and we need to understand this picture so that we can direct resources and develop effectiveness and efficiencies to support an increasing demand.

Your participation in these workshops will be critical to ensuring we have a realistic and comprehensive understanding of the needs of the support sector in the short, medium and long term.

All our usual support events including our Supporting the Supporters Network events will take place – including a focus on recruiting, retaining and managing volunteers, Fundraising and Supporter Wellbeing.

As always, there is much to do. Lucky we get an extra hour on Sunday night!

Time to draw breath now and indulge in a little chocolate and the joy of some family time.  Happy Easter from us to you.

Monica Ferrie, GSNV CEO



WHEN: Friday, April 12th 2019, 9am – 4:30pm

WHERE: Auditorium of Queensland Children’s Hospital, Brisbane, Australia

Wednesday 3rd April 2019
9.30 am to 4.00 pm

Caulfield Park Sports Club
280A Balaclava Road, Caulfield North  Vic  3161

Tuesday 30th April 2019
9.30 am to 4.30 pm

Caulfield Park Sports Club
280A Balaclava Road, Caulfield North  Vic  3161


Are you caring for someone with a disability? Do you want to know more about the National Disability Insurance Scheme (NDIS)?

If you answered yes, City of Melbourne is partnering with Carers Victoria to deliver a three-part program to help you understand the NDIS process and to get ready for the NDIS planning conversation. 
  • Tuesday 7th May - preparing for change
  • Tuesday 14th May - planning
  • Tuesday 21st May - plan management 
All sessions run from 1:45pm to 4:45pm - everyone is welcome to attend.

Where? Kathleen Syme Library and Community Centre, Carlton

Cost? Free

Bookings are essential. For more information, please contact Healthy Ageing on (03) 9658 9190 or email

In the media


European bias in genetic research could lead to 'dangerously inadequate' understanding of disease

How rapid advances in genetics are personalising medicine

The rise of noninvasive prenatal testing



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 
April 6 @ 10:00 am - 4:00 pm
April 7th @ 9:00am

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

From Primary to Secondary School (save the date: more information coming!)
Tuesday 7th May 

Introduction to the NDIS
Saturday 11th May

Transition to Primary School (save the date: more information coming!)
Tuesday 21st May 

Younger Onset Dementia: Part 1
Friday 5th July

Younger Onset Dementia: Part 2
Wednesday 10th July

2, 9 & 16 April - Dementia program

LGBTIQA+ carers program

All LGBTIQA+ carers are welcome to join the following free sessions, located in Carlton.

Bookings essential via or phone 9658 9190.

•Friday 12 April 10am to 12.30pm. Social brunch.

•Tuesday 30 April 5.30pm to 8pm. Social dinner.

Super Boss Day is a fun initiative where bosses or co-workers dress as a superhero for a day to raise funds for HeartKids to support children with heart disease and their families.

Once registered, you will receive your own fundraising page, which you can share with your family and friends, to ask them to support your cause! For more tips & tricks on how you can get started click here.
Carers Dementia Conference 25th June 2019
Our GSNV Volunteer Kim An has created this month's GSNV Poll on Transition, which will lead us into a discussion at our next InFocus Series event in May!

Transitioning from paediatric care to adult care can be extremely difficult when there are no or very little support structures set in place within the healthcare system. Paediatrics, amongst the community, is known to nurture and look after the physical and mental wellbeing of the entire family whereas, in many cases, entering into the sphere of adult care can be incredibly daunting and confusing for both patients and parents when facing it unprepared and without assistance.

So the GSNV wants to know…

1. Would it be better for an individual to have a single specialist/case manager that manages their condition for their entire lifespan OR to have a department/system within health services (eg. hospitals) that helps connect the patient, their current paediatric team and their future adult care team to each other to help with transitioning? 25% said a single specialist, 75% said a system

2. Should workshops be held for young people to help with transition from paediatric to adult care? 100% said yes, 0% said no

3. Should adult hospitals have wards and clinics specifically for young people? 100% yes, 0% said no

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

Emily Hickey GSNV Volunteer

Hi, I’m Emily! And I’m one of the newest GSNV volunteers you might see around at events! 
 I’m a third-year Business student at Deakin University, and I am studying a Bachelor of Management, majoring in Events. 

I myself have a rare genetic condition called Ehlers-Danlos Syndrome (Never heard of it? That’s ok! Most doctors and even specialists haven’t heard of it either!). It’s a complex connective tissue disorder that is multisystemic and affects the collagen in my body. I came to learn about the GSNV after moving from Cairns to Melbourne for advanced medical support, where my Mum, sister and I were privileged to be offered support from the GSNV to create a national Ehlers-Danlos Support Group in Australia and to advocate for improved awareness and treatment options.

Being on the receiving end of all the support GSNV offers and working behind the scenes, I have come to truly appreciate all their hard work and efforts. It is also because of their Volunteer Program that I have been blessed with the opportunity to meet extraordinary new people, including medical professionals, community support members, friends and families, and most importantly, others directly affected by a genetic condition. I have learned about genetic conditions I have never heard of, opening my eyes even further to the desperate need for a better health care system in Australia. 

I have completed administrative and design tasks in preparation for the 2019 Rare Disease Day event and have learnt to use new innovative tools such as Canva and RedCap. It has been a delight interacting with fellow volunteers and I look forward to meeting and working with the new applicants this year. 

My supervisor, Kari, has been extremely flexible and understanding of my available volunteering hours, especially considering my medical condition can sometimes limit me from doing certain physical tasks. I could not have asked for a better, more inspiring and hard-working organisation to volunteer my time to, so thank you GSNV! I am so excited to continue my volunteering with the GSNV and use my skills to plan and run charitable fundraising events in the future.

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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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