Bits and Pieces May 2015


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

From the team

Dear GSNV community,
From my desk in Rimini, Italia, it gives me great pleasure to pen this month’s message from the GSNV team.  As advised in last  month's E-Bulletin Bits and Pieces, I will be abroad for the rest of 2015 and conducting my direction of the GSNV from Italy.  After a whirlwind two weeks since I left Melbourne on April 4, I have finally had the time to reflect on recent events and my adventurous relocation to this beautiful country. It has been a very busy 19 days of work and settling in!

As I have discovered, the life of an expatriate is somewhat challenging, particularly in terms of getting settled and reestablishing ones digital life in a new hemisphere. Between my laptop, iPhone, Mini iPad, Apple TV and hard drives, I have had my share of frustration in trying to get all devices to sync and on a dependable network. 
After arriving in Italy April 7 I hit the ground running and was attending the 5th Alpha-1 Global Patient Congress and the 2nd Biennial International Research Conference on Alpha-1 Antitrypsin in Barga, Lucca – Italy by April 9.  The congress was superb and represented the very best of international cooperation, coordination and rare disease approach.  I applaud the Alpha-1 Global Foundation for a very successful congress and for bringing together patient groups, the scientific/research community and clinicians in an open and cooperative environment.  All stakeholders were given an opportunity to participate and contribute to an agenda that was interesting and engaging. It was apparent from the very beginning of the congress that the Alpha-1 international community is strong, active, supportive and and very well led.
I was very privileged to be part of the Alpha-1 Australian contingency and I thank the Dr. Charlie Strange of the Medical University of South Carolina (MUSC) and the Alpha-1 Global Foundation for their support with getting me to beautiful Barga. Lucca.  Steven Knowles of the Alpha-1 Association of Australia (AAA) was greatly missed but was absolutely with us in spirit. As a member of the Alpha-1 Global Steering Committee, Steven was integral to the organisation, and development of the congress.  I also thank Steven for his vision in getting a few extra Australians to Italy (including me as a GSNV and Murdoch representative) and in facilitating an opportunity for key collaborators to meet and spend some time discussing future work. 
The AAA was strongly represented by Jennifer Nankervis and John Arkinstall from Australia and it was wonderful to see the relationships they have developed with the international Alpha-1 community and the respect they receive from their peers.  My experience at the congress was truly inspiring and in many ways, has set the scene for further opportunity, research and collaborations while I pursue my sabbatical (work) in Italy.  I look forward to working with the Alpha-1 Australian community and progressing important projects with them.
Following the success of the Alpha-1 Global congress I had my feelers out and was keen to take up any immediate opportunities for learning and networking here in Italy.  Upon invitation from some learned colleagues in the region of Emilia Romagna (Rimini) I was fortunate to attend the Regione Emilia-Romagna XXVIII Convegno – Anomolie Congenite Del Sistema Nervos Centrale, a one day workshop facilitated by the  Gruppo Di Studio Sulle Malformazioni Congenite (I.M.E.R).  It included discussions on dysmorhology, syndrome diagnosis, rare conditions of the central nervous system and case histories of disorders of the corpus callosum.  With my very best Italian language understanding in progress, I was delighted to participate in the workshop and gain further understanding of the rare disease clinical and research environment here in Italy. With a long standing congenital malformations and anomalies of the central nervous system registry very active in this region, I was interested to read the I.M.E.R Annual Report and definitive data on such rare diseases in Italy.  Two congresses in two weeks has constituted a wonderful start to my working life in Italy and I look forward to following up on the networking conducted at both. 
This month’s Bits and Pieces comprises many events and support group activities to be noted on our network calendar.  2015  is definitely the year of the conference and there are many relevant to the community and the GSNV membership, later in the year.  I make particular mention of the Mitochondrial Disease Information Day coming up soon on May 16, 2015.  With the chilly Melbourne weather setting in I think ‘stay in bed day’ is also a must!
Please refer any news, events, comments and feedback to or contact our office on 03 8341 6315.

Louisa Di Pietro
Group Leader GSNV


Support group news

2nd May 2015
JDRF Gala Ball
JDRF's Gala Balls take place across Australia, providing a remarkable opportunity to connect with friends, family and colleagues while supporting the mission to find a cure for type 1 diabetes and its complications through the support of research.

Amongst all the glamour and fun of this elegant black tie event, guests will get an exclusive update on the latest research news, be entertained by professional musicians and have the opportunity to make a difference to type 1 diabetes research through their support of auction items, raffles, and our Fund-a-Cure appeal. Click here for more info.

16th May 2015
Mitochondrial Disease Information Day 
It is an excellent opportunity for mito sufferers and their families to hear from leading experts in the field of mitochondrial medicine and meet other patients. Register your interest here.

AMDF is planning other information days across Australia throughout the year including one in Sydney in June. Check here for more information in the coming months.

17th May 2015

Red run classic
New Farm - Brisbane.
The Red Run Classic is a fundraising run/walk for Haemophilia Foundation Australia and Haemophilia Foundation Queensland. Funds raised will provide programs and services for the bleeding disorders community across the nation. For more info click here.

13th June 2015
Superball MND Charity Ball
“The Park”, Powerhouse Club, Lakeside Drive, Albert Park
Entertainment provided by The Chrome Donuts and popular singer/guitarist Bernard Mogg and featuring outstanding major and silent auction items. Click here for more info or email to register a table.

27th June 2015

HeartKids 25th Anniversary Gala
Join HeartKids for their 25th 'Silver Anniversary' Stars of the Silver Screen Gala Ball at 6.30pm at the RACV Club in Melbourne. For more info click here or contact Melissa Fernandez or (03) 9329 0446 
28th June 2015
Stay in Bed Day
Stay in Bed Day is an annual fundraising and awareness raising initiative of the Australian Mitochondrial Disease Foundation (AMDF). It launched six years ago as a way to raise awareness of mito within the general public, a play on words highlighting just one of the many side effects mito has on sufferers - having no energy and simply not being able to get out of bed. For more info see the website.


In the media

Trial for new Huntington disease drug
Huntington disease is an inherited type of neurodegenerative disorder that causes abnormal involuntary movements, psychiatric symptoms and dementia, and is caused by a single gene mutation that results in the production of abnormal huntingtin protein. In this study researchers will trial a new gene silencing therapy and measure the remaining amount of abnormal huntingtin protein in the cerebrospinal fluid of Huntington’s disease patients. For more info click here

Free breast screening program expands to include women over the age of 70
Australia's free breast screening program will be expanded for the first time to include women over the age of 70, with the Health Minister hinting a possible boost to screening for other cancers is also imminent. Until now, the Federal Government's breast screen mammogram program finished when women turned 69. To read more click here.

Genetic factors in autism associated with higher intelligence
A new study has shown that people that carry genetic variants that are linked to Autism score higher on intelligence tests - particularly in tasks that require complex reasoning skills that do not require verbal skills. Read more.

Interestingly, Microsoft is now looking to hire people with autism in recognition of their unique strengths. Read more

Genetic causes of Hirschsprung's Disease
Two new genetic variants have been identified to interact together to cause a rare condition called Hirschsprung’s disease. This condition arises in early development when nerves that should control the colon don't grow properly, causing bowel obstruction and can be fatal if not treated. The newly discovered genes encode proteins that are involved in guiding developing nerve cells. Read more.

New genetic clues to Pediatric Seizure Disorders
Researchers have identified a new gene involved in severe developmental epilepsies called salt-inducible kinase 1 (SIK1). These seizures occur early in life and can cause developmental disabilities, autism, uncontrollable seizures and can be fatal. Read more.

Bursaries to help young carers 

The Young Carer Bursary Programme allows carers up to 25 years old to continue study or vocational training. This year moer than 800 applications were received, so the Commonwealth Government will offer an additional 150 bursaries in addition to the 150 already awarded. Read more.


2nd May 2015
People with Multiple Sclerosis Conference

Click here for more info (scroll down on the page) and here to register.

24th - 26th May 2015

Communities in Control 2015

Australia's most inspiring social movement - the biggest and best annual not-for-profit sector gathering. Click here for more info.

Primary: 6th May and Secondary: 26th May
Choosing a School Primary or Secondary
A Down Syndrome Victoria Family Workshop

An important evening for all parents with information and discussion about choosing the best educational setting for your child with Down syndrome starting primary school or transitioning to secondary school. For more information and to register, please click here for Choosing a School (Primary), 6th May and here for Choosing a School (Secondary), 26th May.

5th - 6th June 2015 
6th International Workshop on the History of Human Genetics

Glasgow, UK.
Principal Themes: ‘Human Gene Mapping’ and ‘Oral History of Human Genetics’. Click here for more info.

6th - 9th June 2015 

European Human Genetics Conference 2015

Glasgow, UK.

10th - 13th June 2015 
38th European Cystic Fibrosis Conference

Brussels, Belgium 
Click here for the program and here for more information.

24th - 26th June 2015 

Tourette Syndrome Congress 2015

London, UK
The 1st World Congress on Tourette Syndrome and Tic Disorders is designed for clinicians, researchers, post-doctoral fellows, medical residents and allied healthcare professionals with an interest in current research, diagnosis and treatment of these and related conditions. For more info please click here.

3rd - 5th July 2015
National OI conference

See the nOIse Registration Form and the nOIse Flyer.

29th - 31st July 2015 

Primary Health Care Research Conference

PHCRIS organises the annual Primary Health Care Research Conference - a major event in Australian primary health care research, to present research findings, discuss research methodology and policy issues, and build and maintain essential networks between researchers, practitioners, policy makers and representatives of consumer organisations. For more info click here.

8th - 11th August 2015 

Human Genetics Society of Australasia Annual Meeting

Perth, Australia

15th -18th August 2015 
11th Australasian Cystic Fibrosis Conference

The aim of the conference is to provide a forum for health care professionals to meet and learn about the treatment of Cystic Fibrosis, research developments and scientific breakthroughs. A separate Lay Program is provided to enable the CF community to learn about new therapies, treatments, scientific discoveries and research findings. For more info click here.

1st - 3rd October 2015 

17th Australian and New Zealand Conference on haemophilia and related bleeding disorders 

Gold Coast
This conference will bring together people with bleeding disorders and their families and carers, as well as health professionals, policy makers and industry. It is a great opportunity to learn more about care and treatment in Australia and New Zealand, and around the world, and to plan for the future. For more info click here.

11th - 13th December 2015 
The 26th International Symposium on ALS/MND

Orlando, USA
The symposium is the largest medical and scientific conference specific to Motor Neurone Disease (MND) and is the premier event in the MND research calendar for discussion on the latest advances in research and clinical management. For more info click here.


Free Printable Medical ID Cards 
Information that you can present to your physician on each visit that list your current medications and other medical information needed to update your medical chart. Create a free personal medical ID wallet card on your computer keyboard by completing the form below, and printing out the final card on your printer. Also useful when travelling. Click here for the website.

The Murdoch Childrens Research Institute Blog 
Click here to read stories, opinions and news from MCRI staff, students and patients. 

Transport Assistance
LINK Community Transport provides community transport which aims to reduce social isolation and increase the access of the frail aged, people of any age with a disability and their parents or carers to activities, services and facilities in the community. The service is directed primarily at individuals and small groups of clients to attend social, recreation and leisure activities. Transport is provided by a pool of volunteer drivers and transport assistants using our vehicle fleet, private vehicles belonging to volunteers or community transport resources belonging to other organisations. The service is offered primarily within the Northern suburbs of Melbourne. For more info click here.

Vocational Training
Brite is a not-for-profit organisation providing training and employment services to people with a disability and to people in the community experiencing vocational disadvantage. Brite are currently seeking new students interested in gaining a Certificate IV in Disability, Aged Care or Leisure and Health. For more information click here or call Janice on (03) 9481 6422.

Technology donations and discounts for not-for-profit organisations
Connecting Up in partnership with TechSoup Global provides donated technology products and services from companies such as Microsoft, Cisco, Symantec and Adobe to eligible income tax exempt (ITE) Australian not for profit groups and libraries. Through this program eligible not for profit organisations can access the latest products. For more info click here.

Cancer Council Online Sexuality Resource
A new online resource has been developed by Cancer Council NSW after research findings showed that about 62 per cent of cancer patients are believed to experience a range of sexual issues as a result of their cancer or treatment. The research also showed that at least 30 per cent did not seek support. The online resource, Rekindle, offers advice and information on sexual changes and intimacy issues after a cancer diagnosis.

Rekindle can be used on any device, including laptops, tablets and smart phones. It is available 24 hours a day, seven days a week. It is suitable for people who are at least six months post-treatment, and has 12 sections tailored to gender, relationship status and sexual orientation. The Rekindle project was funded by the Australian Research Council.

Media source Brisbane Times
Original source

Amaze ASD Library
The Amaze ASD Library is a specialised Autism Spectrum Disorder resource for individuals, families and professionals. Located at the Amaze office, 24 Drummond Street, Carlton 9am to 5pm Monday to Friday except public holidays or periods of office closure. Available to all current members of Amaze living in Victoria for pick up. Access online to Journal of Autism and Other Developmental Disorders.

Autism therapy
Mendability is a new low-cost therapy for autism spectrum disorders that can be administered at home by a parent. Click here for more details.

Dr Marcia Braden’s presentation from FX workshop
Slides from Dr Marcia Braden presentation at Fragile X workshops in Melbourne on 27 March and in Sydney on 30 March 2015 can be found here. Dr Braden’s sessions focussed on educational perspectives and behaviours. Video footage of the entire presentation will soon be available here.

Inclusive language resource
The Australian Network on Disability have complied a brief refresher on what is acceptable terminology in relation to disability. Click here.

International online community for people living with neurofibromatosis type 1
Click here to read member stories or to post your own.

A video on the stories of families living with Pitt-Hopkins Syndrome


Grants and Funding
New support group website
Take a look at Australian X and Y Spectrum Support's new website: They provide support for individuals and families affected by Klinefelter syndrome (47,XXY) and other sex chromosome variations. 

Ichthyosis Awareness Month
May is Ichthyosis Awareness Month (IAM). During this month, we encourage families and friends to raise awareness about ichthyosis by hosting grassroots events in their local community and, if possible, raise funds for ichthyosis programs.

Carly Findlay and the Genetic Support Network of Victoria are hosting an event at the zoo on Saturday, 9 May 2015. To put your name on the waitlist follow this link.

Neurofibromatosis Awareness Month 
There are many exciting events and fundraising activities that take place across Australia during NF Awareness Month in May to help raise funds and educate people about the devastating impact of these disorders. Click here to find out whats going on and here for info on how to organise a walk.

May is 65 Roses Month
Help CFV raise money for vital services and programs, advocacy and research that helps to extend the lives of Australians living with cystic fibrosis. You can register your own 65 Challenge for this year at This year the merchandise boxes will contain pens, hand sanitisers and ear phones, each item costing $5. To register your interest in selling these contact Bec -

1st May 2015
National PKU Awareness Day
MDDA will be hosting a series of National PKU Awareness activities around the country to celebrate PKU Awareness Day on May 1. To get involved in an awareness activity in your state or region contact the MDDA office.

Vision Australia - Public policy consultations
Are you interested in ageing and vision loss?
Vision Australia is running a series of telephone based focus groups, to get feedback and suggestions for their public policy, which will be used to advocate to government and stakeholders.
They wish to hear from people aged over 65 and who are blind or have low vision, and from service providers, and people with an interest in ensuring there are equal and meaningful opportunities for people aged over 65 who are blind or have low vision. There are four session:
Session 1: Monday 4 May from 10.00am – 11.15am
Session 2: Monday 4 May from 2.00pm – 3.15pm
Session 3: Tuesday 5 May from 10.00am – 11.15am
Session 4: Tuesday 5 May from 6.30pm – 7.45pmA copy of the updated draft 'Ageing and Vision Loss Public Policy' will be available to read prior to the telephone discussion.
Vision Australia is a not-for-profit organisation and Australia's largest provider of services for people with blindness and low vision.
RSVP: Cassandra on 1300 847 466 or

3rd - 9th May 2015
National Motor Neurone Disease (MND) Week 

Motor Neurone Disease (MND) Week is celebrated nationally in the first full week of May each year. During the week, state MND associations work together to raise awareness and share the vision of a world free from MND. It is also a time to acknowledge the MND community, especially people living with MND, and to remember those who have died. To view the events held in Victoria, click here.

5th May 2015
Workshop: Peer support leadership - what does it take?
This workshop is an opportunity for existing peer support group leaders, members who have taken on leadership roles or people thinking of starting a condition-specific peer support groups to sharpen their skills as a leader. 

This 3 hour workshop will cover topics such as:
  • how does the Australia health system work?
  • what services are available in my local area - health and community services for better self-management.
  • what are the characteristics of an effective leader?
  • how do I delegate and think about succession planning?
  • what is advocacy - knowing what your group needs are and how to advocate for a cause?
More information about this workshop including registration is available here.  For further information, please do not hesitate to contact Esther Lim at (03) 9664 9323 or

8th May 2015
Melbourne Brain Cancer Action Week Forum
Community information & education Program including the latest in clinical trials, seizure management, psycho-social costs & challenges, panel discussion on financial, driving & respite practicalities. There will also be an opportunity to meet with others in a similar situation and connect with support services. RSVP: Tuesday 5th May online.

11th - 17th May 2015

National Volunteer Week
Established in 1989, National Volunteer Week is the largest celebration of volunteers and volunteerism in Australia, and provides an opportunity to highlight the role of volunteers in our community and to say thank you to the more than 6 million Australians who volunteer.

More than 6 million Australian volunteers give happiness to others each year. And research says that that those volunteers are happier as a result. So this National Volunteer Week (11-17 May 2015), help us make Australia the happiest place on earth, by giving as much of your time as you can. Give Happy. Live Happy. More info.

12th May 2015

Dame Elisabeth Murdoch Luncheon

It’s been 50 years since Dame Elisabeth Murdoch AC DBE became the first Patron of the RCH Auxiliaries. Yet her support of the Auxiliaries and the projects they spearhead for the hospital continues.

In 2009, Dame Elisabeth gave her name in perpetuity to a prestigious Auxiliaries initiative to support nursing excellence and advancement — the Dame Elisabeth Murdoch Nursing Development Scholarship.

This $50,000 scholarship is provided for each year by a fun-filled fundraising luncheon on International Nurses Day. For tickets, click here.

12th May 2015
Peer Support Network Meeting: Successes and difficulties when facilitating Peer Support Groups
This meeting will focus on the good, and the difficult when facilitating Peer Support groups. This meeting is designed to highlight some of the really great ideas that different organisations have developed over the years to support people with chronic illness. And we'll also be work shopping some of the challenges. This two-hour meeting will be a mix of presentations and hands-on work, looking into what makes (and breaks!) peer support groups and programs. Click here for more info.

15th May 2015

Tuberous Sclerosis Global Awareness Day

To mark Tuberous Sclerosis Global Awareness Day, TSC affected families and other TSA supporters are invited to come along to a picnic in a city or town closest to you. If you would like to host a picnic, contact Hayley via

All picnics will be held on Sunday 17th of May except for Tasmania, which will be on Saturday 16th May. Look out for the blue and white balloons to find the events.

Post your photos on social media with the #tscglobalday hashtag.
All picnics are hosted by volunteers, so please RSVP to make their jobs as hosts easier. For more info click here.

16th May 2015


The international Hereditary Angioedema awareness day aims to raise the worldwide awareness of Hereditary Angioedema (HAE), to help ensure that each and every HAE patient receives a timely diagnosis and a level of care that enables a healthier life. For more info click here.

17th May 2015

Worldwide 22q at the Zoo

Join thousands of 22q families worldwide to celebrate a fun-filled awareness day at zoos all over the world! Organised and developed by The International 22q11.2 Foundation, 22q at the Zoo! Worldwide Awareness Day will take place at zoos all around the world and is aimed at raising the public profile of chromosome 22q11.2 syndrome. Click here for more info. The Victorian event will be held at Healesville Sanctuary. Contact

31st May 2015
65 Roses Day

11am - 3pm at Federation Square, Cnr Swanston & Flinders Street
Cystic Fibrosis Victoria Ambassadors, Dan & Dani from the TV series The Block and Hawthorn Football Club player, Matt Suckling are all part of the exciting line-up at this year’s 65 Roses Day celebration, supporting Cystic Fibrosis Victoria. Entertainment for the whole family. For more info see the website.

Help the MCRI with fundraising
The Murdoch Childrens Research Institute is looking for families that have had a positive outcome after participating in genetic research to help with a fundraising campaign. If you are interested in participating please email Keri Pereira


ALS Quest
This research study is an anonymous online questionnaire, which has been set up to gather a wide range of information that can be compared between people who have, and those who do not have, ALS/MND. We hope this information will prove useful in searches for preventative measures and treatments of ALS/MND. Click here.

Both people with and without ALS/MND are eligible to complete the questionnaire.

Carers - Your Feedback is Needed

Carers are invited to take part in a survey to further understanding of which services you have found most useful in supporting you in your caring role. This information will be summarised and placed on a website for GPs called “HealthPathways Melbourne”. To participate click here.

Genetics of  anorexia nervosa study
Past and present sufferers of anorexia nervosa are encouraged to take part in a worldwide study aimed at finding a cure. The project wants blood sample results from 13,000 women and men who are suffering, or have suffered, from the disorder in order to understand the genetic factors involved, which can then inform treatment and prevention. For more info click here.

Support worker survey
Yooralla in partnership with Deakin University are conducting a survey with people with disability (and their families) about support workers. For further information contact Dr Mark Brown email: or call 0477 721 257. The survey can be completed in person, over the phone or online

National Cancer Institute's Drug Dictionary
The NCI Drug Dictionary contains technical definitions and synonyms for drugs/agents used to treat patients with cancer or conditions related to cancer. Each drug entry includes links to check for clinical trials listed in NCI's List of Cancer Clinical Trials.  NCI also has resources to help with coping with cancer.

Mito registry
With your help, AMDF hope to build a registry of all mitochondrial disease (mito) sufferers across the country. With information collected from mito sufferers, the registry will track a natural history of mito outcomes. It will ensure patients have the earliest possible opportunity to enter any relevant study or clinical trial and will aid diagnosis. Click here.

Yooralla and Deakin University Research
Yooralla in partnership with Deakin University are conducting a survey with people with disability (and their families) about support workers.  For further information contact Dr Mark Brown email: or call 0477 721 257.  The survey can be completed in person, over the phone or online

Transform Your Future With A Scholarship
Independence Australia's training division, Field has just launched a scholarship for people with a disability. The scholarship is to complete the Certificate IV in Training and Assessment. You can then become a qualified trainer in your chosen field of interest. Valued at up to $8,500, applications for the scholarship from Field are open to people with a disability over 18 years of age and living in Victoria. For more information and an application form call 1300 360 185 or email:

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.
  • Constitutional Mismatch Repair Deficiency (CMMRD)
  • Hajdu Cheney syndrome
  • Idiopathic CD4+ lymphocytopenia
  • Megalencephaly Capillary Malformation (MCAP) syndrome
  • Milroy disease
  • Neutropenia
  • Pantothenate Kinase-associated Neurodegeneration
  • Schizencephaly
  • Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
  • Sotos syndrome
  • Xp11.3-11.4 deletion
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.


Your ideas for Cerebral Palsy could be among the best in the world

Every year for World Cerebral Palsy Day, a competition is held to raise awareness of cerebral palsy and the challenges people with cerebral palsy face. 

This year the theme for the competition is ‘Sponge House’. People from across the world are invited to design a living space that would cater for people with cerebral palsy, to minimise the risk of injury.

Last year, Yooralla staff member Rachel Hartigan won an iPad for her idea that she submitted to the competition.  

Yooralla works with many people with cerebral palsy and we encourage you to submit your ideas for the competition, and also to think about ways that you might incorporate your ideas into your life to support someone with cerebral palsy. 

The competition is open to anyone, including students and industry practitioners. The prize pool is over $10,000 US dollars!

To enter visit the World Cerebral Palsy Day website.

Closing date is Friday 19 June, 2015. Winners will be announced Monday 27 July, 2015.

Arts Access Victoria invites you to Open Your Eyes

Are you a change maker interested in providing great access and opening doors to new and diverse audiences? Do you crave artistic invention?

Join Arts Access Victoria on Tuesday 12 May for a training program that will open your eyes to new ways of experiencing, planning and working with people with disability. 

If you work in arts and cultural management, customer service, artistic programming, marketing and communications, education and learning or industry leadership, this is the workshop for you!

Together, we'll creatively explore disability awareness and inclusion in a way that is contemporary, bold and practical.
Professionals with disability, our facilitators are leaders in disability inclusion. Their lived experience of disability adds enormous richness to discussion, delivering training that is unique and grounded in diversity.

Click here for more information or to book your place at Open Your Eyes!

SBFV Ski Camp Invitation

Spina Bifida Foundation Victoria will run another ever popular on snow ski trip for SBFV members in early September, for both adults and children over seven years old in one camp. They’re now seeking expressions of interest for the trip.

Where: Howman’s Gap with skiing at Falls Creek (transport provided)
When: Friday 11th – Sunday 13th September
Cost: $140 per participant (also covers one parent/carer for children)
+ DWA membership: $90 new DWA members or $70 renewal

All participants will be fitted with adaptive ski or snow board gear before they hit the slopes with a friendly personal guide. Disabled WinterSport Australia (DWA) are the incredibly enabling hosts who provide a wonderful time, accommodation, meals, ski-wear, adaptive skis, guides and transport (or you can drive yourself).

Please register your interest with the SBFV office by the end of May. Places are limited so preference will be given to new attendees with the remaining places allocated by ballot.

Youth media spokesperson (YMS) role

You could be Youth Affairs Council of Victoria's (YACVic) YMS in 2015!

The youth media spokesperson (YMS) is a role for a young person on the board of YACVic. This position responds to media enquiries along with the CEO of YACVic.

Go here for more info and be bold - nominate!

NDIS information forums in your community

Yooralla is offering free education and information forums on the National Disability Insurance Scheme (NDIS) for customers and the community.

These forums will be an opportunity to:
  • understand what we know so far about the NDIS
  • learn more about planning and preparation for transition to the NDIS
  • ask questions about how the NDIS will impact you and your family.
Click here for more info.

BoilOver all abilities performance workshop

Are you interested in performance? Do you live in the Sunbury, Hume, Macedon or Kyneton districts? 

BoilOver Inclusive Performance Ensemble is currently recruiting and invites you to participate in an all-abilities performance workshop!

Where: Sunbury Memorial Hall, 6 Stawell Street, Sunbury
When: Tuesday 12 May 2015, 10am–1pm
Cost: $5, lunch included
Bookings/more information: Contact Melanie on 0400 985 929 or, or visit

Take part in an art exhibition

People with a genetic condition and people impacted by a genetic condition (relative affected, work with people affected, friend affected, etc) are invited to submit their 2 dimensional artworks for the exhibition. Individuals from an Aboriginal background are also invited to participate to showcase indigenous art styles and themes. The focus will be on how genetic conditions have impacted on the artist, the beauty in rare conditions, how family and society view rare or genetic conditions, and how we can work together to present fair and equal genetic healthcare for all Australians.
This art exhibition aims to highlight the uniqueness and beauty of genetic and rare conditions and to showcase the incredible Aboriginal talent we have in Western Australia.
Please see attachment for full details
All works to be dropped off to Sarah Long, at Genetic Services of Western Australia, level 4, Agnes Walsh House, King Edward Memorial Hospital between the 1st and 31st of July, with completed forms.

The Forgotten Ones photographic project

Rare Voices Australia is very excited to announce the launch of a very special project partnering with Alexandrena Parker Photography. A project that Alex and RVA have been working on for the past 12 months - 'The Forgotten Ones'.

The Forgotten Ones photographic project focuses on capturing portraits of young Australian individuals who have a sibling with a rare disease. The project seeks to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering. The series showcases 17 portraits from 12 different Australian families, representing 11 different rare diseases.

If you are interested in attending the opening night on 13th May at Custom’s House Sydney, you must RSVP to secure a spot. Entry is FREE! If you can't attend the opening night come and say hi to Alex on the 14th of May 10am-2pm.

CLICK HERE for further details and bookings.

Assistive Technology on Tour

8 May 15 10:30 am - 3:00 pm
Royal Rehab Centre - Community Hall - Ryde (Sydney)

This event is conducted by the Independent Living Centre NSW - Client Services Team

The session is FREE and is suited for people with disabilities, consumers, carers and family members.

The Independent Living Centre NSW (ILCNSW) is visiting Ryde on 8 May as part of 'Assistive Technology on Tour'. At this free event for people with disabilities, consumers, carers and family members you can get information on:
-What do I need to consider when choosing Assistive Technology (equipment)?
-How can I find out what is available?
-Where can I get advice?

There will also be a hands-on display of equipment and aids for daily living. The ILCNSW occupational therapists will be available at the event to answer your questions regarding Assistive technology equipment and home modification options. There will be focus talks on mobility, self care, communication, and vision options.

To register complete the online form here or for more information contact Odelle at the ILCNSW on 9912 5806 or

The Balanced Carer Program 

The balanced carer program is a four part program aimed at supporting balance in the carer's journey.  The program explores the deeper aspects of perspective and positive relationships.  It aims to empower carers and enrich and sustain their experience.  This program is a great follow on from the Mental Health program – carers, families and the system but not a prerequisite.  

Registration: 9.30am
Time: 10:00am – 1.00pm
Quote reference number 2356 for registration
Where: Carers Victoria, Level 1, 37 Albert Street, Footscray VIC

When: Session 1 – Wednesday 6 May 2015
When: Session 2 – Wednesday 13 May 2015
When: Session 3 – Wednesday 20 May 2015
When: Session 4 – Wednesday 27 May 2015 

Dementia and You Program - Are You Caring For a Person Living with Dementia? 

This is a four week program for caring families who are supporting a person living with dementia. 

Registration: 9.30am 
Time: 10:00am – 1.00pm
Where: Carers Victoria, Level 1, 37 Albert Street, Footscray 

Quote reference number 2360 for registration. 

When: Session 1 – Thursday 7 May 2015
When: Session 2 – Thursday 14 May 2015 
When: Session 3 – Thursday 21 May 2015 
When: Session 4 – Thursday 28 May 2015 

Call 1800 242 636 or email: for bookings. More

Note: Participants for both workshops need to be able to commit to all four of the three hour sessions, as each session builds on the last. 

Time To Decide  

Carer Respite and Support Services - Grampians Region are holding a free interactive workshop for carers who require information and support in making the decisions to move the person they care for into permanent residential care. The session will address the emotions associated with making this difficult decision. 

When: 9:30am – 12.30pm, 14 May 2015
Where: The Parlour, Nazareth House, 218 Mill Street, Ballarat

For further information contact Gert Vrij on 03 5333 7104 or 1800 059 059 email: More

Changing The Picture: Arts Therapy and Neuroplasticity  

The Australian Childhood Trauma Group are holding a workshop about how to create and strengthen neural pathways by using art therapy techniques to assist yourself and others to re-wire the brain. 

When: 10:00am – 1:00pm, Friday 22 May 2015 
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