Bits and Pieces August 2014


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

From the team

It has been a busy time here at GSNV with staff attending conferences and moving office! We are currently residing in a temporary location, until long term accommodation is secured.  We anticipate we will not move again until mid/end of August.
Our new office is located in the West Wing, 5th floor of the Murdoch building, Zone F.  Our office number is W.L 5.2.32. This is the old CEBU office. For those who unsure about finding the office, please call us on (03) 8341 6315.

The GSNV volunteer program has been developed as an opportunity to connect and match skilled volunteers and support groups with projects that need a helping hand.  We have had an excellent uptake from people either interested in applying for the Master of Genetic Counselling Course and becoming a volunteer to assist in that decision making or those who are looking to change their career and learn more about genetic heath and genetic support. 
The GSNV is interested in working with volunteers to generate outcomes that benefit the volunteers in terms of their learning and engagement in the support sector and for support groups looking to achieve some goals with an extra pair of hands. 
Volunteer projects to date include:
  • GSNV Rare Disease Day
  • Launch of a new Spinocerebellar Ataxia newsletter
  • Undiagnosed Children Awareness Day
  • Board Participation – SWAN
  • General volunteering  Crohn’s  Colitis
  • Alpha 1 New Born Screening Application
Please contact and register with the GSNV if your support group is interested in securing a volunteer for a small project or general volunteering role.

Click here to see the latest Spinocerebellar Ataxia (SCAA) newsletter that was developed by a GSNV volunteer.



The Murdoch Childrens Research Institute will be publishing a publicly viewable blog and have asked GSNV to be a regular contributor.
We are looking for our subscribers to contribute ideas for topics for the blog. To inspire your ideas we have some Inspirational Quilts to give away. The first five respondents to send their ideas to will go in a draw to receive a lovely quilt.

Support group news 

Families of Spinal Muscular Atrophy has been coordinating a National Awareness Month for SMA since 1996.  Raising awareness of SMA in the general public can help lead to increased resources for SMA research and better care for SMA patients.  The majority of people, including doctors, nurses and community members, do not know about SMA until it directly affects them.  This is where you can help.  

There are numerous activities that you can carry out in your local community to promote general awareness for Spinal Muscular Atrophy.  Get involved today and engage your local area by writing an article for your newspaper or online publication, host a candlelight vigil or balloon release in honour of our SMA kids, contact your elected officials and request a proclamation stating August is SMA Awareness Month for your town or city.  To help you with your planning, Families of SMA can provide you with several materials and templates. For more info and resources click here.

2nd September 2014

Syndromes Without A Name Australia is excited to introduce Evelyn Bugel’s presenting her workshop on Ambiguous Loss. Evelyn Bugel is a Melbourne-based psychologist, with over 25 years experience in the community sector. Evelyn offers both psychology and counselling for carers.
In addition to Evelyn’s extensive professional experience, she also brings her personal experience of having a child with disability. Evelyn can be relied upon to understand and meet the unique needs of carers who have loved ones with disabilities and chronic conditions. Click here for further details.

3rd September 2014

Neuromuscular Social Support Group For Young Adults First Informal Meeting 

We invite you to an informal social and connect group for people in their 20s/30s with conditions affecting walking, balance, co-ordination or speech – a chance to meet up and chat with people with similar experiences. When: Wednesday, 3rd September, 5.30 pm. Where: Room TUR 1.038, Health Education Learning Precinct (HELP), Royal Children’s Hospital, 50 Flemington Road, Parkville. Please come to our first informal meeting. For more info click here.

3rd September 2014- 10am to 2pm
Respite Information & Development in the East Expo
The 2014 Expo promises to be informative, engaging and lots of fun. Over 70 service providers will be available to provide information. This year brings an exciting change of venue, closer to Eastlink for ease of access and with ample parking available. FREE ENTRY, lots of FREE PARKING and light refreshments. The expo will be held at the Hungarian Community Centre, 760 Boronia Road, Wantirna. For more information and registration please see their website.

September 2014

Muscular Dystrophy Australia (MDA)

National Superhero week - 1st to 5th September - registrations have now closed so look out for your local school or businesses events to support. You can also purchase MDA Superhero Capes for $10 plus P&H by contacting MDA on (03) 9320 9555.  
Mum's lunch  - 12th September - a chance for Mum's with a child under 12 living with MD to get together and share experiences, talk with MDA Neuromuscular Co-ordinator Dani Villiano and a lunch prepared by celebrity chef, Gary Mehigan and his team.  Please contact Lauren at MDA on (03) 9320 9555.


Save these dates for the annual Step Up for Down syndrome walk. Down Syndrome Victoria will be launching the fundraising page soon.  Keep an eye on the website.
Melbourne:  Princes Park, Royal Parade, Carlton
When:          Sunday 12th October – starting at 10am
Wodonga:   Sumsion Gardens at Belvoir Park
When:          Sunday 19th October - starting at 10am
Geelong:     Steampacket Gardens
When:         Sunday 26th October - starting at 10am

In the media

Alternatives to the Medicare co-payment
The Consumers Health Forum of Australia have released a statement on the proposed Medicare $7 co-payment. They highlight the benefits of effective community care to help avoid costly hospital visits as an alternative to the payment. The media release can be found here.

Intellectually disabled employees class action to address underpayment
BSWAT payment tool has been used to reduced the wages of those with intellectually disability, with many receiving less than $1 a day. The High Court found that the payment tool was discriminatory. The Federal Government have introduced a scheme that would result in partial payment to the employees on the condition that they waive their legal rights to recover the full amount of money they were underpaid. To read The Age full article click here.

Breast cancer and stem cell scientist wins achievement award
Clinician-scientist Professor Geoff Lindeman has recently won a cancer achievement award for his clinical and research work on breast cancer. He co-led the team that discovered breast stem cells and has fostered the translation of breast cancer research findings into the clinic to help patients. To read the article click here.

Assistant dog not allowed entry to Tooronga Zoo due quarantine risk
The Daily Telegraph reported that a child living with Autism Spectrum Disorder visited Tooronga Zoo but was not allowed to take his assistance dog with him due to quarantine restrictions imposed by having overseas animals. The zoo provided a trained volunteer to provide assistance and cared for the dog whilst they were in the zoo. The article can be found here.

MDA Executive Director nominated for 2015 Australian of the Year and Australia's Local Hero
Boris Struk founded the MDA after his son was diagnosed with MD and taken it from a research focused group to one that also supports the MD communities needs. Click here to read more of the Herald Sun Leader article.

The positive impact social media can have on mental health
Infoxchange highlight the importance of social media in fostering feelings of social inclusion and connectedness and its ability to provide information and treatment for mental health issues. The full article can be found on their website.


18th - 19th August 2014
Health in a Time of Change - The Role for Consumers and Community
The Consumers Health Forum of Australia are holding a national workshop in Melbourne for consumer representatives and health advocates. Click here for more information.

Various dates August/September 2014
Rural Health Consumer Forums on Consumer Participation in Healthcare
The Health Issues Centre are holding, free to consumers, forums with formal presentations, skill development workshops, information exchange, networking opportunities and panel discussions. Click here for specific dates, locations and registration details.

4th - 7th September 2014:

Professional roles in supporting infant-parent mental health workshop
Early Childhood Australia (ECA) and Berry Street Childhood Institute invite early childhood educators and leaders, practitioners working in child and family services, government policy makers and program administrators and researchers with an interest in infant mental health to participate and share in the key concepts fundamental to infant-parent and early childhood mental health work. For more info click here.

8th - 9th September 2014:

For direct support staff, co-ordinators, managers, planners, teachers and allied health professionals. This is a great opportunity to learn something new, reflect on your practices, share your experiences, expertise and develop networks. Venue: Darebin Arts & Entertainment Centre, Preston. For more information, please visit their website. Or to go directly to their registration site to purchase tickets.

11th - 12th September 2014:

Registrations are now open, for more details visit their website.

18th - 20th September 2014:
Williams Syndrome Conference Sydney
If you are interested in attending this chance to meet other families living with Williams Syndrome and hear/interact with speakers covering topic of medical issues, research and treatment advancements see their expression of interest letter here.

23rd - 24th October 2014:

Registrations are now open, for more details click here.

7th - 9th November 2014

IRDiRC Conference Shenzhen, China
The International Rare Diseases Research Research Consortium are holding their 2nd international conference for stakeholders in the area of rare disease. More details can be found here.


Signature-Prefered Bank or Credit Cards
As of the 1st of August, payments made via a credit or debit card must be verified with a PIN rather than your signature. An exception to this has been made for people who have an cognitive and physical impairment that may impair their ability to use a PIN. They need to contact their card issuer to arrange a replacement signature-preferred card. See the PINwise website or contact you card issuer for further details.

Ageing Well: Mainting Health As We Age
The Chronic Illness Alliance in partnership with National Ageing Research Institute and U3A On-Line have developed an on-line program for over 50s to determine how individuals can maintain and improve their health.

Huntington Disease Guide
The Huntington Society of Canada have release some tips for working with individual's living with Huntington Disease.

Transition to School
A website resource to assist families who have a child with a disability in their transition to school.

Strengthening Disability Advocacy Conference 2014
If you weren't able to attend the Strengthening Disability Advocacy Conference then check out Graeme Innes' keynote address - 'Glitter in the air'.

Guides for Autism Spectrum Disorder and Good Sleep Habits
Click here and here for the guides.

Shprintzen-Goldberg syndrome Factsheet
Have a look at this new factsheet by the Marfan Foundation.

Disability Worker Exclusion Program
The new Victorian Government scheme is aimed at protecting those living in disability group homes.

Carer Card Program

Are you a carer of a family member or someone else? If so, you might be eligible to join the Victorian Government Carer Card Program! Thanks to the Department of Human Services, this program gives you access to discounts and benefits from over 400 supporting organisations including Europcar AustraliaAustralia Post and Salvos Stores!

Support Hubs
1. Pallister-Hall Syndrome Support Hub
2. Gelastic Seizure Support Hub


1st - 31st August 2014
It's that time of year again!
Multiple Sclerosis Australia is holding its annual readathon in the month of August, which is open to all ages. You can still register to participate as an individual or team. See their website for more details.

18th August 2014
Public Forum - A Great Debate: Is Preimplantation Genetic Diagnosis a neo-eugenics project?
The Australian Catholic University is holding a public forum as part of 'Life Week', for more detail see their website.

Entries close 22nd August 
Exhibition opens 16th -28th October

Connected Art Exhibition for artists with a disability or experience of mental illness
The competition, for works created between February & August, and following exhibition is solely for artists with a disability or experience of mental illness. If you would like further information please see their website.

National Pain Week 2014 Snapshot Survey
The preliminary results have been released and can be found here

28th August 2014
Mates on a Mission Charity Dinner
All proceeds will go to Life's Little Treasures foundation, supporting families during premature birth, and the Eat Play Grow
program, supporting specialist feeding and development therapy service for infants. Click here for more details.
Williams Syndrome Awareness
Taylor Swift recently visited Jordan, who lives with Williams syndrome, who is battling leukaemia at Boston Children's Hospital. The video has gone viral thanks to The Ellen DeGeneres Show for spreading the word. You can follow Jordan's journey at Jordan's Brave Page on Facebook!
Early Achievers' Program at Australian Catholic University
This program is open to domestic and international year 12 students, if you are a non-recent school leaver (such as a mature-age student) who are engaged in community activities. For more details see their website.


Australian Rare Disease Survey
The Office of Population Health Genomics, Department of Health WA are conducting an on-line survey in partnership with Rare Voices Australia, The Genetic and Rare Disease Network, Genetic Support Network Victoria and the Association of Genetic Support of Australasia. It is open to individuals over 18 years old who are living with a rare disease or their carers, if the individual is unable to complete the survey. If you have any further questions, please call (08) 9222 6871 or, send them to You can access the survey here.

Parent-carers' perspectives on their relationships with complex service systems
The study will explore the relationships that parents have with many services they are in contact with as a result of their caring role (for example health, education, disability, finance, employment), to guide future policies that affect fathers and mothers who are caring for children with high-level additional care needs.

For more information, including a Participant InformationSheet and consent forms, please contact Pam Joseph on 0435 532 074, or by email at .

Will Genome Sequence Information Change How You View Yourself?
The National Human Genome Research Institute is looking for participants to address this question via an on-line survey available here.

Autism Sibs Study!
Do you have a 13-14 year old? RMIT University would like your feedback to learn more about how they can foster the well-being of Sibs. 

This study is part of a PhD project investigating the quality of life and adjustment of siblings of individuals with autism. With the results of the data that is collected, sibling support programs will be able to be developed.
Information obtained from the study will assist to:
- Understand and identify the concerns of siblings
- Explore factors affecting the adjustment of siblings
- Track the experience of sibs across their lifespan
- Finally, develop strategies for ensuring the well-being of sibs.

If you have a child with autism 3-25 years of age who has a typically developing sibling who is 13-14 years old, they would be very grateful if you could participate in this study. It involves a simple questionnaire for yourself and your teen to complete which should take you approximately one hour each. This questionnaire will ask questions about your child’s satisfaction with life, the accommodations the family makes, and emotional and physical responses to life stress. 

Four families will also win $50 iTunes vouchers; by agreeing to participate in the study you are entering this raffle. You can agree to participate via email: or phone Laura Green on 0400 679 353.
Fluoxetine trial for children with ASD with troublesome repetitive behaviours
The Murdoch Children’s Institute are looking for children to participate in an experimental medical trial involving the medication Fluoxetine - belonging to a class of drugs known as the Selective Serotonin Reuptake Inhibitors (SSRIs).  This class of medication is thought to help in treating repetitive behaviours in children with autism.

It is important for them to know that fluoxetine works, and is safe to use, in children with autism.  It is also important to know how much fluoxetine is required for the medication to work. 
If you are interested in finding out more about this study please refer to the information statement and consent form or contact a member of the research team: Dinah Reddihough or Catherine Marraffa on 9345 5898.

Profiling the experiences of parents of children with and without disabilities
Queensland RMIT University are conducting a study looking into the psychosocial experiences of parents of children with and without disabilities. The study will involve surveying parents of children aged between 6 and 18 years with and without disabilities (via questionnaire) about their parenting experiences. Specifically, the study will investigate how parents experience:
- their everyday parenting hassles and the everyday accommodations made for their child
- their child’s behaviour
- how they parent their children
- psychological well-being
- how they feel about their own parenting
- coping
- the supports available to them

The questionnaire takes around 30 minutes to complete. As a thank you, participating parents can go into a raffle to win one of several Coles Myer gift cards. No risks or disadvantages are associated with parent participation in this study; however, if any parent experiences discomfort or distress after completing the questionnaire, they are free to contact the research team to discuss their concerns confidentially. All information provided by the parents is kept confidential. A copy of the research materials and approvals to conduct the research are here for your information. If you have any questions in relation to this research, please contact Maria Vassos on (07) 3247 5080 or via email

For more research studies see 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.
  • Succinic Semialdehyde Dehydrogenase Deficiency (SSADH)
  • Neutropenia
  • Pantothenate Kinase-associated Neurodegeneration
  • Megalencephaly Capillary Malformation (MCAP) 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.


Ask ACNC sessions

These sessions will provide information about the Australian Charities and Not-for-profits Commission (ACNC) and charity obligations, and will have ACNC staff available to answer questions. For more info see the website. Sessions in Victoria are 1-5 Sept 2014
Jewellery for a Cause is a jewellery company
with a difference!  Our gorgeous jewellery
pieces provide a wonderful way for you to
raise awareness of causes, encourage your
friends to do so, celebrate yourself, and show 
support for someone you love. Jewellery 
for Autism SpectrumBreast Cancer
Bowel CancerEpilepsyLeukaemia 
and Ovarian Cancer is available.

Social Media principles, tips and tricks for your not-for-profit

Kate vanderVoort shares in this blog 4 must-know principles on social media for fundraising to help your not-for-profit strategies. Read more here.


Connecting Up technology donations program overview 3 Sept, 2014 11:00am - 12:00pm. For more details see here.
Sing for Spring  is a community singing project for a great cause. Families, workplaces, schools, community groups, sports teams... everybody is welcome. Communities that sing together can help beat loneliness and isolation, mental illness, cultural tension, unemployment and more. For more info click here.

Public consultation on the Life Saving Drugs
The public consultation on the Life Saving Drugs Programme (LSDP) has opened 
- 11 August 2014.  Information on the Review and the Terms of Reference is available here

The Department of Health invites all interested stakeholders to make a submission by following the link to our public consultation page.

The due date for submissions is 5pm Monday 10 November 2014. 

If you have any queries, or no longer wish to receive updates on the LSDP Review, please contact the Review Secretariat at:

Down Syndrome Victoria Family Dinner Night
Date:          Tuesday 26th August
Time:          5:30pm onwards
Location:     Peninsula Hotel - Atrium
                  195 Bellarine Hwy, Newcomb
                  Children's Play Centre

Cost:        Covered by participants - Bistro Meals
Mains:      $15-30 adults, $7-7.50 children
Why:          to catch up with staff from Down Syndrome Victoria and other local families.
RSVP:      Thursday 21 August

For more information click here.
Follow the links get involved -events-DSV comes to u
Jay Jeffries
Phone: Sue B or Kerry H 1300 658 873 ext: 208 or
Jay Jeffries: 0419 213 643
Early Days Workshop Two - Geelong
For parents of children with Down syndrome, aged between 18mths and 5 years.

Topics include: 
Parenting - the juggling act
Self care... Developing a vision
Early intervention - working as a team
Planning and goal setting  (planning for or renegotiating NDIA plans)
Date:            Wednesday 27th August
Time:            9:30am - 12:30pm
Location:       Gateways Support Services
                    10-12 Albert Street
                     Geelong West
RSVP:           ph: 1300 658 873 ext: 208
or email:
For more information click here.
follow the links:  get involved - events - DSV comes to u
Please note: Babes in arms only (i.e. Children under 1yr)

The Better Start Early Days Support Workshops (Previously New Parent Evening)
This new suite of workshops have been developed to support parents of children with Down syndrome. Each 2 ½ hour workshop provides parents with information, tools, strategies and resources to help them navigate the early years of their child’s life.

Early Days Support Workshop One
The intent of Workshop One is to bring parents of new babies (under 12mths old) with Down syndrome into one space in which families can not only access information, but can meet, share and unite with others in a similar situation. The sessions are relaxed and quite informal to allow for the sharing of experiences and learning from others. Topics covered include: an overview of services and supports including Down Syndrome Victoria and Early Intervention services,  working effectively with health professionals, supporting potential and looking after yourself and your family.

EDSW1 - Upcoming date: September 15th - 6:30pm Carlton

Early Days Support Workshop Two
This workshop is designed for families who have ideally attended Workshop One and whose children are aged 1-4 years. Topics covered include: self-care, planning and goal setting, early intervention and creating a vision (if you haven’t attended Workshop One you can still register for Workshop Two).

EDSW2 -Upcoming dates:
August 27th - 9:30am - Geelong
August 28th - 9:20am - Mordialloc
Looking Ahead - Leaving School
Do you have child aged 14 to 20 who is still at secondary school?

Then this Down Syndrome Victoria workshop may be of interest to you.

We will explore a range of options and funding available post school.

Discover how to prepare and plan for a life after school, including future living arrangements and how to work towards that; work experience during school years; planning to achieve goals and visions. 

Hear representatives from the Department of Human Services, service providers representing Individual Support Packages, Disability Employment Services, and Planning expertise.

When:  Wednesday 10th September
Where:   Paddy O’Donoghue Centre
             18 – 34 Buckley Street
             Noble Park
For more information click here.

Club21 Regional Expansion

There are still some places available for adults with Down syndrome 18+ who would like to join a social group in either the Mornington Peninsula or Geelong regions. If you are interested please contact Kerry Hands for a Fact Sheet or phone 1300 658 873 ext. 202

Geelong families of adults may like to come to the DSV comes to Geelong dinner on 26th August.

Facilitators and Volunteers Wanted for Club21

We are still looking for young and vibrant people to lead the Mornington and Geelong Club21 groups. The commitment is for a weekend day each fortnight, approx. 4 - 5 hours on each day. They will be supporting a small group of adults who are enthusiastic and very social. Person centred practice experience and an understanding of self - determination are desired; as well as a sense of fun. Ideally suited to a student or others with weekend availability. Please contact Kerry Hands for a Position Description or to discuss further. or phone 1300 658 873 ext 202
Down Syndrome Victoria has entered into a partnership with Charitybid to raise money for our various programs. DSV will be regularly posting items for auction onto the website, which also has partnerships with multiple charities and clubs. All monies raised from the sale of items will go to Down Syndrome Victoria.

To bid on an item, please visit and select Down Syndrome Victoria in the `Find Club or Charity’ section.

At present DSV has a unique hand-crafted coffee table available to one lucky bidder.
If you wish to donate an item to DSV for auction, all you need to do is sign up to Charitybid, upload the item (images and detail important), select how people can collect or receive the item and select DSV as the charity for the proceeds to go to.

All financial transactions are done by credit card and monies deposited directly into our DSV account.
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