- From the team
- Support group news
- In the media
- Conferences and seminars
- 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.
Please help Support Spina Bifida Foundation Victoria
Support group news
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
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
Australia Alopecia Areata Foundation Trivia night
14th June 2014
For the flyer click here
. RSVP: firstname.lastname@example.org
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.
Great Gatsby Gala
20th June 2014
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 email
: 6:30 pm till Midnight. Venue
: RACV Club, 501 Bourke Street, Melbourne.
Bayley House Birthday Bash concert
26th June 2014
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
World Scleroderma Day
29th June 2014
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
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 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
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
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
A visual guide
to Parkinson's disease.
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 : email@example.com
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: firstname.lastname@example.org 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
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 email@example.com
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
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
- 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 firstname.lastname@example.org
or phoning (03) 8341 6315.
For a listing of support groups in Victoria see the links page on the GSNV website: www.gsnv.org.au
to see the GSNV calendar of events.