Bits and Pieces May 2014


  • From the team
  • Support group news
  • In the media
  • Conferences and seminars
  • Resources
  • Community
  • Research
  • Seeking contact
  • GSNV Calendar

From the team

Hello, my name is Keri and I have recently started at the GSNV in the role of genetic education and support coordinator. During my first week I have been getting my head around the policies and procedures of the GSNV. I am a recent Master of Genetic Counselling graduate having completed the course in 2013. Over the last 5 years I have worked as a clinical researcher on a research project investigating the genetics of autism. Through this position and the Masters course, I have come to appreciate the role of education and support in helping families and individuals come to terms with their change of circumstances when a genetic diagnosis is made. I am very much looking forward to getting started and developing this role to meet the needs of people who approach the GSNV.

Support group news

May 12-18 is National Volunteer Week
For a list of events click here.

May is 65 Roses Month
During May Cystic Fibrosis associations across Australia will be selling 65 Roses Merchandise and encouraging people to take a 65 Roses Challenge. This year, in Melbourne, they will be celebrating with a two day event in the city on the 30th and 31st May. Click here for more information.

May is NF Awareness Month
The Children's Tumour Foundation supports those impacted by Neurofibromatosis (NF). For a list of events and more info click here.

20-21 May 2014:

Positive Partnerships

Free two day workshop for parents/carers of school age students on the Autism spectrum in Ballarat. Flyer and Form. RSVP via website.

31 May 2014:

Friends of Sammy Joe Foundation Dance Extravaganza

Dance Extravaganza at the Broadmeadows Leisure Centre supporting the Friends of Sammy Joe Foundation. Flyer.

Smith-Magenis Syndrome Family Picnic

Please join the GSNV at the Smith-Magenis syndrome (SMS) family picnic and meet Ann C. M. Smith (the Genetic Counsellor who helped first describe the condition) as well as SMS Families and friends from Victoria and Tasmania.
This is a unique experience for the parents to network, exchange ideas, share experiences, mingle with Ann C. M. Smith in a relaxed, non-clinical environment. This event will help all who participate to gain a better understanding of the intricate challenges and rewards of living with a child with SMS and will give siblings the opportunity to see that they’re not alone as well as the chance to have fun and explore the great attractions of the Royal Botanic Gardens. For more info click here. Please send your RSVP to Mathieu Laguë on or 0404 164 935.

2-8 June 2014:

Rare Chromosomes Disorders Awareness Week

Join together with others from around the world to raise awareness of rare chromosome disorders. More info.

14 June 2014:

Australia Alopecia Areata Foundation Inc. Trivia Night

Flyer and Form. RSVP:


Superhero Day

Come to school or your workplace dressed up as your favourite superhero. Proceeds support research at the National Muscular Dystrophy Research Centre. Website.

In the media

Personalised Medicine:
Walter and Eliza Hall Institute of Medical Research's A/Prof Clara Gaff recently spoke about personalised medicine on TripleR's Einstein_agogo program. Listen to the podcast here.

IVF Funding Overseas:
Last month the Ontario (in Canada) government announced that it will fund one ‘cycle’ of in-vitro fertilization (IVF) for people that are unable to have children without it; becoming the second province in Canada to fund IVF. Read the article here.

NDIS Updates:
- An article outlining honest feedback and a broad range of views from people who are part of the National Disability Insurance Scheme (NDIS) trials.
- An interview with Assistant Minister for Social Services, Senator Mitch Fifield - he commits to fully roll out and fully fund the NDIS.
- A podcast about the campaign launched to ensure the security of the NDIS.

Day Care for Children with Autism
A Sydney couple have created Australia's first family daycare service for children with Autism. Read the Article.

Hypohidrotic Ectodermal Dysplasia
A story about one mother's diagnostic odyssey and the search for effective therapies.

Multiple Sclerosis
Prime Minister Tony Abbott has pledged his support to 2014. Click here to watch the video.


11-15 May 2014:
World Federation of Hemophilia 2014 World Congress
The largest international meeting dedicated to bleeding disorders is happening in Melbourne. More info. Register here.

18- 20 July 2014
Disorders of the Corpus Callosum Conference 2014

The National Organisation of Disorders of the Corpus Callosum is hosting a conference featuring professional presentations, workshops, Kids and Teens Camps and more in Boston, Massachusetts. More info. For registration:

19-20 July 2014:
EDS Conference 2014
Inaugural Conference on Ehlers-Danlos Syndrome and other hypermobility related disorders taking place at the Novotel Parramatta. More info. Register here.

23-25 July 2014:
Primary Health Care Research Conference
Integrating knowledge exchange to improve primary health care outcomes at the Canberra National Convention Centre. More info. Register here.


New Computer System at The Royal Children's Hospital
A roll-out for a new computer system at The Royal Children's Hospital, Melbourne was announced last month. This new IT system will allow parents to access their child’s records, make appointments and stay in touch with doctors with their smart phones and tablets. More information here and here.

Genetics 4 Medics Website/Resource
This is a limited version of the popular Medical Genetics app - Genetics 4 Medics. The website provides a brief description on the genetic basis and important features of common genetic conditions.

Neurofibromatosis (NF1) Patient Registry
The Washington University Neurofibromatosis Canter has launched a registry that collects information from people with NF1 from around the world to help researchers and clinicians better understand the complications of living with NF1. The hope is that ultimately these studies will inform personalised treatment and improve the quality of life for people with NF1.

Concession Stamps at Australia Post
Do you have a Federal Government concession card? You may be eligible for a reduced rate on domestic stamps, and other offers. For more info click here.

A Gide to Living with Aspergers
For more info click here.

A Video About Living with Fragile X syndrome
To view click here.

A Guide to Toddler Development
By Raising Children Network - the guide can be accessed here.

A Guide to Early Intervention for Disability
By Raising Children Network Children with disability benefit from early intervention – the earlier, the better. But it can be hard to know which early intervention is right for your child. A good early intervention will be family focused, well structured and based on reliable evidence. Click here for the guide.


The final tally of the 2014 The Royal Children's Hospital Good Friday Appeal was an amazing $16,846,396.09! To find out more about what this money will be used for - click here.

Opera Australia, the producers of The King & I have chosen to open their Final Dress Rehearsal on Sunday 8th June, 6pm at The Princess Theatre as a charity performance, with the proceeds of this night to go to Murdoch Childrens Institute. This will be a red carpet event and the first viewing of the show in Melbourne before it officially opens. Buy your tickets here! The password is: CHILDREN


Online Survey:
Rural patients who drive to attend one or more of Melbourne's public hospitals.
Support the Chronic Illness Alliance in their fight for better access to cheaper parking for people with a chronic illness and in this case from rural areas. If you would like to help out, please fill in the survey here.

Online Survey:
The Centre for Children and Young People at Southern Cross University are conducting a survey about belonging when living in a country town.

This survey is for young people with cognitive disability (15 – 25 years) who live in regional Australia. It asks questions about the people, places and activities that help young people to feel a sense of belonging and connection. The research is being conducted by a team of academic and community researchers, led by Dr Sally Robinson.

If you or anyone you know would like to participate, the survey can be accessed here. For more information, please look on the website at or contact Sally at or on 02 6620 3134.

Online Survey:
Autism Spectrum Australia (Aspect) are looking for participants for a for a 20-minute online survey on resilience and coping in parents and adult caregivers of children diagnosed with Autism Spectrum Disorder!If you are the adult caregiver of a child diagnosed with ASD (18 years or younger) we would love to hear about your experiences of coping and resilience caring for your child!

Please click here for the survey or for more information contact

Online Forum:
Children with Disability Australia is pleased to launch an online Facebook forum regarding education and funding reforms. The forum can be accessed here.

They are seeking input about experiences of education and what reform is needed and value your input and look forward to receiving your feedback. It is vital that the direct experience informs this crucial education reform.

The Aikenhead Centre for Medical Discovery
The Aikenhead Centre for Medical Discovery has been established at St Vincent’s Hospital Melbourne. It will be Australia’s first biomedical engineering research and education hub. The Centre will be working on advanced medical devices such as bionic devices for spinal cord injury and motor neuron disease; islet cell transplantation in Type 1 Diabetes; the bionic eye; deep brain stimulation for psychiatric conditions, Parkinson’s Disease, chronic pain and epilepsy; stem cell regulation in cancer treatment; epilepsy control; limb repair and regeneration.
The aim is to bring commercial expertise and science together with injections of capital from the State and Federal Governments.
Robert Pask, Chair of the Chronic Illness Alliance advises that consumer representatives may be approached to contribute to these endeavours. Note that the Alliance supports that consumer representatives should receive reimbursement based on their time commitments and the level of responsibility expected of them.

Seeking Contact

The GSNV works hard to connect individuals and families interested in sharing their experiences and insights with others. People interested in contacting others “in the same boat” can contact the GSNV to provide details and we will assist in making connections.
  •        Bernard–Soulier syndrome
  •        Bullous pemphigoid
  •        Monilethrix
  •        Pyrrole disorder
  •        Solitary median maxillary central incisor
  •        Usher Syndrome Type 1  
  •        Hemiconvulsion-Hemiplegia (HH) syndrome
If you would like to make contact with others in the same boat and share your experiences with the above conditions, please either contact the GSNV office by emailing or phoning (03) 8341 6315.

For a listing of support groups in Victoria see the links page on the GSNV website:


Click here to see the GSNV calendar of events.


Courses for not-for-profit organisations!

Connecting Up, Inc. is a not-for-profit organisation that works to unleash the power of not-for-profits by providing information, products, resources and programs. A full list of their services and resources can be found here.

Below is a selection of the courses available for not-for-profit organisations.
Online course: Social media bootcamp 20th May - 24th June. Please note there is a cost involved for this course.
Webinar: Leadership - solving complex problems22nd May, 2014 11:00am - 12:00pm. Please note there is a cost involved for this course.
Webinar: 'Discover a range of mobile apps for your not-for-profit'. 28th May, 11:00am - 12:00pm. FREE!

Webinar: 'Connecting Up technology donations program overview' 5th June, 1:30pm - 2:30pm. FREE!
Health Issues Centre is Australia's only provider of these accredited, innovative training programs for consumer leaders and health service staff.

Patient Experience Forum - Consumer Perspectives Transforming Healthcare
Thursday 15 May, 9:00am-4:30pm.

What is the patient experience and why is it important? This will be the question we will explore in this one-day forum as we hear from patients, carers and health service professionals. We will look at a variety of approaches for capturing patient experience including patient narratives, measurement tools, surveys and online forums. Finally, the focus will turn to how the information we capture is best used and implemented for quality improvement.

The interactive program will feature presentations showcasing examples of innovative practice from a range of consumers, clinicians and health service staff. 

The full program and registration form are now available on the Health Issues Centre website. 


Health Issues Centre Accredited Training

Course in Consumer Leadership (22095VIC) 
This course provides consumer leaders with foundation skills and knowledge to work in partnership with health services to plan and implement health and community services. 
Dates: Tuesday 3, 17 & 24 June
Time: 9:30 - 4:30pm

Venue: Level 8, 255 Bourke Street, Melbourne
Vocational Graduate Certificate in Consumer Engagement (22092VIC)
This course provides consumer leaders and staff of health-based organisations with advanced skills and knowledge to work collaboratively to provide strategic consumer engagement activities.

Dates: Wednesday and Thursday 21, 22 May & 4, 5 June 
Time: 9:30 - 4.30pm

Venue: Level 8, 255 Bourke Street, Melbourne

Click here to register for a course.
Advocacy for inclusion is an organisation that aims to improve the lives of people with a disability.

Their website has a list of training courses and resources to support self-advocacy.

Advocacy for inclusion are also holding a Control & Choice Expo about NDIS support on the 22nd of May at Exhibition Park Budawang Pavilion (ACT). Click here for the flyer.
Aspect Positive Behaviour Support encourages children, young people and adults to develop the skills for an improved quality of life.

Their list of workshops for behaviour support can be found here.
Down Syndrome Victoria Family workshop - An evening of discussion around the issues and proven strategies for a successful transition from primary to secondary education. 27th May 2014 7:00pm - 9:00pm (in Fitzroy). For the Flyer click here.
Online course: Genomic Medicine Gets Personal. This course will provide an introduction to genomic medicine and a better understanding of the issues associated with personal genomic information. Classes Start: 4th June 2014. Course Length: 8 weeksFREE!
Disability services workshop: This workshop is for careers and families who want to be connected directly to local council and state disability services as well as those who wish to refresh their knowledge. Please note there is a cost involved for this course. Please see the flyer for more info or contact Michelle Jankovic Director on 0408 153 642.
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