Bits and Pieces June 2014


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

From the team

Hello everyone, my name is Anna and I have recently joined the GSNV as the administrative assistant. I have recently enrolled in the Master of Genetic Counselling, having completed degrees in health science and counselling in Perth. I look forward to learning about and contributing to support services available for families and individuals living with a genetic diagnosis, as well as engaging volunteers in the GSNV’s Volunteer Program. With group leader Louisa and communications assistant Nancy away this month, newcomers Keri, Nandini and myself will be looking after the office. Also as a result of these staff absences, the next edition of Bits and Pieces will be postponed until July. Please continue to send through contributions for inclusion in future issues.

Louisa will be presenting at The European Human Genetics Conference on experiences of establishing a genetic support group in Victoria and Nancy will be completing a Master of Genetic Counselling placement in Toronto. We wish them both the best of luck.

Regards, Anna


Support group news

Please help Support Spina Bifida Foundation Victoria
Spina Bifida Foundation Victoria are currently facing a critical financial situation and might have to cease all the programs and services that members have come to rely on, including newsletters, Facebook site, website updates, telephone advisory services, camps, social functions and awards.

Red Nose Day Month
To officially kick off Red Nose Month, Petra den Hartog will launch her book, When Relationships Hurt, Too on Wednesday June 4 at Morris Jones Restaurant. For more info see the Flyer.

9th -15th June 2014

International Men’s Health Week

Help raise awareness and support the health and well being of the men in your local community. For more info see the Andrology Australia website or to find out how to organise an event click here.

14th June 2014

Australia Alopecia Areata Foundation Trivia night
For the flyer click here. RSVP:


14th June 2014

World Blood donor day

The focus for this year's campaign is "Safe blood for saving mothers". The campaign aims to increase awareness about why timely access to safe blood and blood products is essential for all countries as part of a comprehensive approach to prevent maternal deaths. Click here for more info.

20th June 2014

Great Gatsby Gala
HeartKids is hosting a gala event with the Great Gatsby theme. To be a part of this memorable evening and support HeartKids please book your tickets here, for more information please contact Norman Hutton on 03 9329 0446 or emailTime: 6:30 pm till Midnight. Venue: RACV Club,  501 Bourke Street, Melbourne. 

26th June 2014

Bayley House Birthday Bash concert
Bayley House has been part of the Brighton community since 1951. It was originally established by a group of parents under the auspice of the Helping Hand Association in order to provide support for intellectually disabled children and their families. Since then the Organisation has undergone several name changes and has grown significantly in the number services offered and the people we support. For the flyer click here and for more info click here.

29th June 2014

World Scleroderma Day
Help support Scleroderma Victoria's fundraiser event: Snuggle Up for Scleroderma - High Tea Pyjama Party. Click here for the Flyer.


In the media

Deaths data to benefit researchers and patients
A recent story in The Age describes a new partnership between Australian Institute of Health and Welfare, BioGrid Australia and The University of Melbourne means that data about deaths in Australia can now be released to researchers while satisfying privacy, ethical, legal and data security requirements. This will help advance medical research with a greater understanding about patterns of disease and injury, and the effectiveness of treatments and interventions. For the article click here.

Fabry disease
A story about the latest BRAVE Award (Fabry Australia support group) recipient for her work in looking after four family members who have all died from the disease. See the story here.

Fragile X research
Some recent studies suggest that the Autism-like symptoms seen in people with Fragile X syndrome only superficially resemble those of the classic definition of Autism; a finding that may have implications for treatments for both conditions. Read more here.

The budget
The government will save money by letting go one of the human rights commissioners and current disability support pensioners to have their fitness reassessed; it is forecast that 5% will lose their benefit. Other recipients will participate in "compulsory activities"; it is expected that 2% will have their disability pension reduced due to earnings from part-time work. Read the article here. The Government's commitment to financing the full roll-out of the NDIS by 2019-2020 is discussed here. Other opinion pieces suggest that the budget will lead to greater inequality. Consumer Health Forum of Australia have also released a member's brief about this.

Mental heath program success.
The Kids Matter program has helped teachers and students at a Goldfields primary school address bullying and other aspects of mental health. Read the article here.

Google Glass aid those with vision and hearing impairments.
Google Glass trials are helping those with vision and hearing impairments. Check out this video.

Volunteer conference resorts to crowd-funding
Australian organisers of the World Volunteer Conference in September have resorted to crowd-funding to pay for people to attend. Read the article here.


31st May - 3rd June 2014:
The European Human Genetics Conference
The European Human Genetics Conference (now in its 47th year) is a forum for all workers in human and medical genetics to review advances and develop research collaborations. This year it will be held in Milan, Italy. Come by and say hello to Louisa (GSNV Group Leader) who will be presenting "It is a very lonely path" Exploring experiences of establishing a genetic support group in Victoria.

5th - 10th July 2014:
13th International Congress on Neuromuscular Diseases
This four-yearly event will be held this year in Nice, France. Experts in the field will gather to share scientific advances such as those in understanding neuromuscular diseases and developing new treatments. See the website for more information, the program, and registration

16th - 20th July 2014:

For registration and schedule click here.

18th - 20th July 2014:
Disorders of the Corpus Callosum Conference
Featuring 35 informative lectures and discussion groups, the conference's professional presentations are grouped into five tracks under the headings of Medical, Therapies, Behaviors, Education, and Financial/Community Life. For Details and Registration Form email. Boston, MA. USA.

19th - 20th July 2014:
Inaugural Conference on Ehlers-Danlos Syndrome
Topics that affect children, adolescents and adults with Ehlers-Danlos Syndrome. Click here for the website.

20th - 23rd July 2014:

For more info.

4th - 5th August 2014:

For more info and the flyer.

6th - 8th August 2014:

For more info, keynotes and program.


A to Z Kidney Health Guide
The National Kidney Foundation have released a guide about kidney disease and includes information about Fabry disease.

Fragile X App
A free app to help you keep up with the latest Fragile X news. Also see the National Fragile X Foundation website for useful guides, podcasts and back-to-school toolkit.

Learn about what it's like to live with a rare disease, connect with and discuss your experiences with other people with similar experiences and access information and resources about rare diseases. Join here.

Youth Disability Rights Hub
Youth Disability Advocacy Service Victoria have launched the Youth Disability Rights Hub, an online resource for young Victorian’s with disability to know and defend their rights. The website covers topics such as employment, education, transport, travel, housing, money and much more.

Recreational Respite applications now open
The Recreational Respite Program supports carers of a young person with disability who is aged between 6 and 24 years of age and who has high support needs. It provides funding for use primarily over school holidays, to help the young person access community activities where possible. It assists carers to purchase limited services to support once-off or short term respite needs.

A Guide to Charcot Marie Tooth
For teenagers and teachers.

Parkinson's Disease
A visual guide to Parkinson's disease.

Genetic Counselling
A podcast about why and when Genetic Counselling is needed. Also have a look here for a Conversation Corner piece with Justine, an Associate Genetic Counsellor who discusses the work of Genetic Counsellors.

Youth disability rights hub.
A new resource to help empower young Victorians with disabilities to know and defend their rights. Click here for the website.


2nd - 8th June 2014

Rare Chromosome Disorder Awareness Week
During this week, we would love people with rare chromosome disorders, families, friends, support groups, professional colleagues, non-profit organisations and others to join together around the world to raise awareness of rare chromosome disorders. If you would like to fundraise for Unique please email Craig Mitchell, Unique Chief Operating Officer :

10th June 2014
OPEN DAY with Senator the Hon Mitch Fifield to discuss disability.
Disability Action Group Eastern Region invites all people interested in disability issues to an OPEN DAY with Senator the Hon Mitch Fifield, Assistant Minister for Social Services, to discuss all issues relating to disability. Karralyka Mines Road, Ringwood East. 10am until 11.30am. Please register your interest with Woody Marriott: or 9720 9800.

A blog post about fairness.
Fragile X Strong

Early Childhood Education and Care review.
A Review of the National Partnership Agreement on the National Quality Agenda for Early Childhood Education and Care is currently being undertaken. The 2014 Review includes a public consultation process to seek input from the early childhood education and care sector, families and other interested stakeholders about the implementation of the National Quality Framework. For more info click here.


Anxiety Research
The Centre for Disability Studies is looking for adults with a mild intellectual disability aged 18-30 years old who experience anxiety to participate in a research study on treatment for anxiety. If you would like further information, or to be involved, please contact Lynette Roberts at

Patient Attitudes Study
Haemophilia Foundation Australia (HFA) is participating in a multi-national study of patient thoughts regarding novel factor VIII and IX products, including longer acting treatments. More info and the survey.

Comments invited on disability transport standards
A draft review on the Disability Standards for Accessible Public Transport was recently released for public comment. For more info click here.

Spinal Muscular Atrophy Type 1 clinical trial in the U.S.
Phase I Clinical Trial of Systemic SMN Gene Therapy for Spinal Muscular Atrophy has begun at Nationwide Children’s Hospital. The purpose of this trial is to evaluate safety and efficacy of intravenous delivery of self-complementary treatment of Spinal Muscular Atrophy type 1 (SMN1). For more info click here.

Advanced statements focus groups
Advanced statements (written documents that enable a person to detail their treatment preferences) will come into effect under the new Mental Health Act from 1 July. Mind Australia is giving carers the opportunity to influence the information material being developed for these statements. Focus groups will take place in Melbourne and Wangaratta. More info here.

Aboriginal and Torres Strait Health Scholarships
Scholarships are available for individuals who are pursuing qualifications in the field of Aboriginal and Torres Strait Health research. For more info click here.

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
  •        Hemiconvulsion-Hemiplegia (HH) syndrome
  •        Monilethrix
  •        Pyrrole disorder
  •        Solitary median maxillary central incisor
  •        Usher Syndrome Type 1  
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.


BioGrid complimentary training sessions for researchers

The training will cover how BioGrid works, how to find out what data is available in BioGrid and how to apply for access to data. For more info click here.
Sensory/Autism-friendly performance.

Autism-friendly performance of Aston's Stones at the Sydney Opera House for ages 3+.

Gentle and heart-warming, Aston’s Stones reminds us how important it is to see and to appreciate the value in small things - even little stones.

Friday 13th June 2014

To find out more and book tickets please click here.

Working with Loss and Grief workshop

We all experience loss at different times in our lives. Grief is a natural reaction to losing someone or something we care about. But how can we cope with the hurt and pain and confusion that loss and grief bring? And how can we support those with disability who are coping with loss and grief?
This workshop is designed to help participants better understand the loss and grief process; to develop ways to cope with personal loss and grief and to better support others who are experiencing loss and grief.
Date: Monday 21 July 2014
TIME: 9:00am – 4:00pm (Registration from 8:30am)
VENUE: University of Sydney.
For more info click here.
Phone: 02 9036 3600 Fax: 02 9036 3613 Email:
Please note there is a cost involved.
Courses for carers, volunteers and support care workers provided by Home and Community Care. Courses include:

Reflective Practice Skills For Health And Community Care Support Workers
This course will help support workers promote client wellness and independence, within support plan guidelines.

Autism Spectrum Disorders
This course is conducted by AMAZE Victoria and is an introduction to Autism Spectrum Disorder (ASD). This session includes an introduction to the Characteristics of ASD, the History, prevalence, causes, cognitive approaches and core strategies. This training is essential for anyone supporting an individual with Autism.

Progressive Neurological Conditions
This workshop is conducted by Multiple Sclerosis (MS) Australia and involves a discussion on common neurological conditions such as Multiple Sclerosis and Parkinson's. The impact on a person's life is explored along with the impact on family.
The program also explores symptom management strategies and how the Active Service Model (ASM) may be applied when working with people with progressive neurological conditions. A Certificate of Attendance will be issued to all participants.

Understanding Loss And Grief
This workshop will help community care staff understand the impacts of loss and grief on elderly clients. A range of support strategies and approaches will be discussed, including how to look after yourself.

Click here for the whole list.

Free discovery tour

Register for a free Discovery Tour at the Walter and Eliza Hall Institute (WEHI). Meet some of WEHI's wonderful scientists, take a walk through a working laboratory, and find out about WEHI's latest research. 

Public Forum

23 July: Illuminating… rare cancers

Register online today to book your attendance

Time: 6–7pm

Place: Walter and Eliza Hall Institute, 1G Royal Parade Parkville VIC 3052

Webinar: Preparing for the National Disability Insurance Scheme (NDIS).

Thursday 5 June 2014 from 1:00 – 2:00pm (AEST) You can test your connection ahead of time using this test link.

The sixth NDIS webinar brings together participants and carers from the 2013 NDIS trial sites to share their experiences accessing the Scheme. Participants will share their advice on how best to prepare for the NDIS and discuss and respond to questions from the online audience. This timely discussion will assist people preparing to enter the Scheme in new and expanding trial sites across Australia.

Access all NDIS webinars, including the most recent webinar ‘Meet the Governors of the National Disability Insurance Scheme’, on the NDIA website.

The NDIA invites people with disability, family members, carers, advocates, support providers and community members to join the discussion online and contribute to the conversation. The webinar comprises audio, visual, live captioning and Auslan to make it as widely accessible as possible. 
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