Bits and Pieces October 2014


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

From the team

Welcome to the latest edition of the GSNV E-News Bulletin  Bits and Pieces. Although summer and the holiday season is fast approaching its still very busy in the community/non profit and research sectors.  Its AGM and grant writing season and this means groups are hard at work reporting and reflecting on the year that has passed and planning and negotiating for much needed funding and resources for the year ahead.  If you are a financial member of a non-profit organisation or have voting membership support your group by attending their AGM and having a say or contributing to their forward planning and decision making. It is important that the genetics community reflects a diverse voice and represents all those involved rather than just a proactive few.

Notice of the Annual General Meeting of the Genetic Support Network of Victoria Inc.

20th November 2014
Please join the Executive and Committee of the GSNV Inc as we reflect on our work over the previous financial year and we consider important priorities for 2015.  The purpose of the AGM is to present the Annual Report including full financials and to elect the incoming Committee. The report will include highlights and achievements and will discuss structural and operational outcomes. There will also be a special presentation during the evening. For more info click here.

The GSNV will be posting details of our Small Grants Scheme and Peer Support Training 2015 very soon.  Please be sure to regularly check our web updates or contact the GSNV office if you wish to register your interest.  Expressions of interest for a Small Grant or Peer Support Training can be sent to  or phone 8341 6315.

Support group news

New support group!
Click here for the website

Our Faces Support was started by Jenny Woolsey who was born with and has two children with Crouzon syndrome. Jenny grew up north of Brisbane feeling very alone and misunderstood and since having her children she wanted a support group but there wasn't any. (People rang her for support). This lead Jenny to establish her own Australia-wide support group for people born with, or who acquired, a facial difference and their family and friends. Jenny has based the group on AboutFace in Canada, though currently Our Faces Support is not a charity. Jenny hopes to have state get-togethers, a buddy system for people with the same or similar conditions, newsletters and an annual camp and wants people to know they are not alone.

29th October 2014
Chronic Illness Alliance Peer Support Network Meeting 4
For those of you who are interested in peer support and networking with others involved in peer support, then come along to the Peer Support Network meetings.

Each meeting features a specialist guest speaker on a subject of current interest to peer support providers, as well as a host presentation on peer support in action. For more info click here.

31st October 2014
Children's Tumour Foundation of Australia - Dining with Daises Gala Dinner
The Dining with Daisies Gala Dinner (formerly the Black & White Gala Dinner) is a major annual fundraising event of the Children’s Tumour Foundation of Australia raising critical funds to sustain research, awareness and support services for children and adults living with neurofibromatosis in Australia. Flyer.

31st October 2014
Sick or Treat Charity Ball (Sydney)

Join Rare Cancers Australia and help support the many people diagnosed each year with a rare and less common cancer. Held on the night of Halloween, the evening promises to be great fun whilst directing focus on this very important cause. For more info click here.

7th November 2014
Spina Bifida Foundation Victoria AGM/Night of Celebration
Join in from 7pm – 9.30pm at the Parliament House Federation Room. Cost: $15 per person (free for carers). Also see the AGM documents (notice/agenda, previous minutesnomination form, proxy form and explanatory notes) as well as a Menelaus Award Nomination form for you to nominate a fellow member who you believe has had a year of significant achievement. There will be a guest speaker, entertainers, gourmet supper, prizes and awards on the night.

7th - 9th November 2014
Down Syndrome Victoria Regional Member Family Camp for Families from Western Victoria
Down Syndrome Victoria in conjunction with Wimmera Uniting Care, would like to invite Down Syndrome Victoria members living in Western Victoria to a weekend family camp at D’Altons Resort in Halls Gap. To register for the camp and to find out more information click here.

8th November 2014
Sanfilippo Australiana Trivia Night 
Participate in the Australiana Trivia Night. Please note, prearranged tables of 10 are preferred (please email team member names) or you can be allocated into a team. Email: Flyer. It's set to be a night of Fun, Facts and Fundraising and will be hosted by comedian, journalist and now Quiz Master, David Smeidt. Book your table here.

8th November 2014
Myotonic Support Group Lunch
An opportunity to meet new people who are affected by Myotonic Muscular Dystrophy. Affected individuals, partners and carers all welcome. Muscular Dystrophy Australia (MDA) will cover the cost of lunch for people affected by Myotonic Muscular Dystrophy. Location: T.B.A. See the MDA website for updates.

9th November 2014
SIDS and Kids Walk to remember
Time: 10:30 AM - 2:30 PM 
Location: Palms Lawn, Albert Park Lake
To register click here

9th November 2014
Spinal Muscular Atrophy Association of Australia Style My Life 
Spinal Muscular Association of Australia are holding a lifestyle event in Beaconsfield on Sunday 9th November from 2.30 - 6.30 pm. Tickets are $25 and can be purchased through SMA Australia - 9545 3633, Solana Fitness 101 Seebeck Dr. Narre Warren South or IBare Level 2 Fountain Gate.  For more info click here. Flyer.

10th November 2014

Syndromes Without A Name Annual General Meeting

SWAN's AGM will be held on Monday, 10 November 2014 at 12.00pm. The meeting will be held in the Bishop Room, WL5.2.26, Level 5 (Access via green lifts) at the Royal Children’s Hospital Melbourne, 50 Flemington Road, Parkville. Light refreshments will be served, please R.S.V.P. for catering purposes to the secretary at: by Friday, 7 November 2014. Also see the notice, proxy form, committee nomination form, and committee member position description.

13th November 2014

Cystic Fibrosis Victoria Fashion Parade 
Blue Illusion, 113 Glenferrie Road, Malvern @ 7pm. For more info see the flyer.

14th - 16th November 2014

Heart Kids Tween Camp 
Heart children aged 10 - 13 years of age are invited to join in at HeartKids Victoria Tween Camp. For more info see the website. For more Heart Kids events - click here.

15th November 2014
Mito information day
This information day will provide clinicians, patients and their family and friends with information about mitochondrial disease. Venue: The Royal Children's Hospital, 50 Flemington Road, Parkville VIC. Further details to come (see the webpage). Register by contacting Rebecca Davis  on  1300 977 180 (option 2) or on 

16th November 2014
Walk to D'Feet Motor Neurone Disease  
Please come and participate in the 2014 Melbourne Walk to D-Feet Motor Neurone Disease and join 1,500 people walking around Princes Park. All funds raised will go towards research into cause, treatment and cure. There will be children's activities, a raffle, coffee and sausage sizzles or you can bring a picnic lunch. For more info click here.

22nd November 2014
Very Special Kids Fair  9am - 4pm
Held on the beautiful grounds of Very Special Kids in Malvern, the Fair has a vast array of homemade cakes and preserves, fresh flowers and plants, quality toys and baby goods, as well as craft and home wares that make perfect Christmas gifts.

Younger members of the family will also enjoy entertainment and activities, such as baby animal petting farm, face painting, jumping castle, motor car rides and a very special opportunity to have a photo with Santa and his elves.

Entry is a gold coin donation and 100% of the proceeds go to Very Special Kids to support more than 800 families through the experience of caring for children with a life-threatening condition.

22nd November 2014
Very Special Kids Fashion Sale  9am - 3pm Malvern Town Hall
Clothing donated from top Australian and European brands will be on sale at up to 90% off the retail price. All funds raised will go to Very Special Kids, a local charity that supports families caring for children with life-threatening conditions.

For a gold coin donation fashionistas will enjoy feel-good shopping at feel-good prices with thousands of ladies', men’s and children’s clothing items, jewellery and accessories available.

22nd - 23rd November 2014
HFV Family Camp
Haemophilia Foundation Victoria is holding a Family Camp at Lake Dewar Lodge.
  • Heaps of fun activities, meet new people, catch up with old friends, share stories
  • Discover new ways to care for yourself and your family
  • Relax and unwind... 'Time out' socialising sessions, plenty of games
  • All meals supplied from Saturday morning tea to lunch Sunday
  • Comfortable accommodation (private rooms with bunk beds) with shared bathroom facilities
For current HFV members:
Costs per family are $80; $40 per extra single adult over 18 yrs.

Pleases are strictly limited so bookings are essential. If you have any queries or to book please email Andrea at HFV on here for the flyer and registration form.

28th Novemberber 2014
CFV Christmas Breakfast
Christmas Breakfast for Cystic Fibrosis - Hilton on the Park @ 7.30am - see the flyer.

2nd December 2014
Myositis Support Group Lunch
Come out for a fun social lunch, make new friends and meet up with people facing similar challenges. Carers and partners welcome. RSVP George Scott 0417 318 701 Location: Mulgrave Country Club, Cnr Wellington & Jells Rds, Wheelers Hill

7th December 2014
Big Boys Toys Car Show
Muscular Dystrophy Australia has a new major awareness and fundraising event. Big Boys Toys Car Show and family fun day to be held at Essendon (Airport) Fields 9am-5pm. Everyone welcome. 500-700 cars on display including hot rods, muscle cars, Corvettes, Camaros,exotics, Santa and more.

10th December 2014
Australian Leukodystrophy Support Group Charity Challenge Inaugural Melbourne Golf Day Luncheon
The Charity Challenge invites you, your colleagues and corporate rivals to put just 7-8 hours in your life aside and help to ‘make a difference’ with a round of golf at the beautiful Woodlands Golf Club. Time: 7am Arrival/Registration, 8am shotgun start. Luncheon: 1pm, 2.45 Presentations, Location: Woodlands Golf Club, Mordialloc, Victoria. Click here for the flyer.

In the media

First womb-transplant baby born
A woman in Sweden is the first to have a baby using a transplanted womb. Women can be left without a functioning womb due to birth defects or from cancer treatments. Previously, surrogacy would have been their own only option for a biological child. To read the article click here.  

The pain of passing on a genetic condition
A mother talks about the pain of passing on her genetic legacy of osteogenesis imperfecta — a condition that would likely cause her many fractures and possibly painful corrective surgeries. Whilst wishing her daughter could be spared any suffering she also admires her strong spirit, wisdom and compassionate nature. Read the article here.

A new test to screen for ovarian cancer?
A study recently published in the Journal of Obstetrics and Gynaecology, has shown that tumour DNA can be detected in cells left on tampons used by women who had been diagnosed with ovarian cancer. Read more here.

A new MRI technique detects evidence of cognitive decline before symptoms appear
A recent study published the journal Radiology has shown that a new magnetic resonance imaging (MRI) technique is able to detect signs of cognitive decline in the brain even before symptoms appear. The technique has the potential to serve as a biomarker in very early diagnosis of preclinical dementia. To read more click here.

New Multiple Sclerosis genetic variations found
Recent genome wise association studies have identified more than 159 genetic variants associated with Multiple Sclerosis, the majority of which are related to immune function and are expressed on immune cells. Read more here

A new gene identified in cleft lip and palate
Mutations in the gene ADAMTS20 has been implicated increasing the risk of developing cleft lip and palate. For more info click here.

SMA gene therapy trial
AveXis has recently announced the completion of dosing in the low dose cohort in the world's first human gene therapy trial for the treatment of infants with spinal muscular atrophy (SMA). Read more here and here.

NDIS update
A recent report by Anglicare has recommended the ammendment of the National Disability Insurance Scheme needs to better recognise the needs of carers. The report has found that ageing parent carers are suffering from high degrees of stress and anxiety due to the uncertainty about the future care of their son or daughter after they die. To read more click here and here

Support under the NDIS for people with a mental illness is also causing stress for many because of the lack of clarity around funding changes that will mean many that have previously relied on support will no longer be eligible for funding. To read more click here, here and here.  

Syndromes Without A Name (SWAN)
Heather Renton founder of SWAN Australia recently appeared in a local Leader article - she is a finalist for grant money that will help her communicate with her members and foster social inclusion. Read the story here


12th - 14th November 2014:
5th Annual World Orphan Drug Congress
Join orphan drug developers and patient groups and over 500 key rare disease stakeholders in one place. Brussells, Belgium. Click here for more information.

13th November 2014:
Garvan Institute presents Genomics in Healthcare
The Genomics in Healthcare conference will explore the current uses of genomics and forecast the potential for the discipline. It will cover the policy, economics, legal and social aspects of genomics. See the website and flyer.

21st - 23rd November 2014:
International Williams Syndrome Conference
International speakers with expertise in Williams syndrome will present the different topics: paediatrics, cardiology, genetics, education, dental care, psychology, psychiatry, linguistics, music therapy, pharma research, sleeping problems.  Budapest, Hungary. For more information visit the website

5th December 2014:
Australian Twin Registry Conference
A conference for researchers, clinicians and twins about current child health issues highlighting the utility of twin research. Relevant to all those working in the fields of fetal, child and adolescent health. For more information see the website.


Capes 4 Kids
Capes 4 Kids Australia Inc. is the first program of its kind in Australia that gifts super-powered capes to little superheros in hospital. They pride themselves on being able to bring a smile to the faces of the young crusaders, helping them to embrace their inner strength and to fight the challenges that they and their families are facing. For more info click here.

myHAE Smartphone App
myHAE is a smartphone App for patients with Hereditary Angioedema (HAE) that they can use to record details of their attacks on their phone.  These details are then saved to the App Diary that can be emailed or printed out to take to appointments. The App can be downloaded from the App Store or GooglePlay.

The Inclusion Club 
A not-for-profit organisation dedicated to the inclusion of people with disability in sport and active recreation. See the website here.

NHS index of Medical condition
A comprehensive information resource maintained by the UK's National Health Service Website

Mobile for People with Blindness Launched
A phone with a braille option and room for storing upto 10 contacts. For more info see the article.

Young Carer Bursary Programme.
The purpose of this programme is to assist young carers in greatest need, to continue to study and to relieve the financial pressure for them to undertake part-time work, in addition to their educational and caring responsibilities. Financial assistance is provided in the form of a bursary.

Young carers, aged 12 – 25 years are eligible to apply. Applications open on 13 October and close on 9 November 2014 for 2015 bursaries. 150 bursaries will be granted in 2015. See the E-flyer and an information sheet.


25th October 2014

World spina bifida hydrocephalus day
Click here for the website.

15th November 2014
Relay for Life - Darebin
Relay For Life is a unique event where teams challenge themselves to take turns to keep a baton moving in a relay style to raise money for the Cancer Council. Location: Edwardes Lake Park Athletics Track, Edwardes Street, Reservoir, VIC 3073 Start Time: 4pm Saturday Finish Time: 10am Sunday Coordinator: Kavi Balasubramaniam Contact Phone: 1300 65 65 85 Email: To see the details for other locations click here

18th November 2014
The Lab in Chirnside Park 
This is a technology club for 10 to 16 year-old young people diagnosed with Asperger’s Syndrome or High Functioning Autism who enjoy working with computers. It offers one-to-one tuition by technology professionals in areas such as programming, 3D, digital design and gaming. This is an opportunity to:
  • Make friends
  • Learn about technology
  • Discover new skills and have fun
Date: From November, 2014 ongoing Location: Chirnside Park Community Centre, 33 Kimberley Drive, Chirnside Park VIC 3116 Time: Tuesday 4.30pm - 6:30pm Cost: There is no cost but each student is asked to bring along their own iPad or Notepad if possible. For more info contact Mike Mcdermott 0419755142

22nd November 2014
GSNV Peer Support Training
10:00am - 3:00pm Royal Children’s Hospital 50 Flemington Road PARKVILLE Level 1 - H.E.L.P Precinct Room 1.053. Free for GSNV financial members (GSNV membership fee: $22, or $11 for concession) $55 for non-financial members. Please contact us at to register your interest.

GSNV Small Grants Scheme
Please contact us at to register your interest in a small grant application


Independent NDIS survey
The National Institute of Labour Studies (NILS) at Flinders University is currently carrying out a survey as part of its independent evaluation of the National Disability Insurance Scheme (NDIS). NILS wants to hear from people with disability, their families and carers, about their experiences of disability supports under the NDIS. If you’re already participating in the NDIS, this is an opportunity to give feedback about what is working well for you and what is not.

If you would like to participate, you can find information about the survey and how to register here.

Government NDIS survey
The Department of Human Services is asking people with a disability in Victoria who are over 18 about their experiences one year after the Victorian state disability plan 2013 - 2016 (the plan) was launched. The plan has action to make it easier for people with a disability to take part in all areas of life.

If you would like to participate 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.
  • 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.


Living with Cancer Education Program - Cabrini Brighton

Date: 6 Nov 2014
Time: 9:00 am - 3:10 pm
Location: Cabrini Brighton
This free one day program provides an opportunity to ask questions and discuss concerns about cancer. The program is run by health professionals specialising in cancer and all guest speakers are experts in their field. Family and friends are encouraged to attend and refreshments are provided.

This session will focus on: 
• What is cancer? 
• Cancer treatments and side effects 
• Improving communication with your health care team 
• Personal reactions 
• Diet and nutrition 
• Community supports 

Call Carmel Morton on 9508 5656 or the Cancer Council Helpline on 13 11 20 for details.

Living with Prostate Cancer Education Program - Austin Health

Date: 18 Nov 2014
Time: 10:30 am - 2:00 pm
Location: Olivia Newton-John Cancer Wellness Centre
This free four session program provides an opportunity to ask questions and discuss concerns about prostate cancer. The program is run by health professionals specialising in cancer and all guest speakers are experts in their field. Family and friends are encouraged to attend and refreshments are provided.

This session will focus on: 
• What is prostate cancer? 
• Cancer treatments and side effects 
• Improving communication with your health care team 
• Personal reactions 
• Diet and nutrition 
• Community supports 

Call Tammy Boatman on 9496 3799 or the Cancer Council Helpline on 13 11 20 for details.

Living with Cancer Education Program - Peninsula Health

Date: 19 Dec 2014
Time: 9:45 am - 3:00 pm
Location: Frankston HospitalThis free one day program provides an opportunity to ask questions and discuss concerns about cancer. The program is run by health professionals specialising in cancer and all guest speakers are experts in their field. Family and friends are encouraged to attend and refreshments are provided.

This session will focus on: 

• What is cancer? 
• Cancer treatments and side effects 
• Improving communication with your health care team 
• Personal reactions 
• Diet and nutrition 
• Community supports 

Call Abbie Kelly on 9784 7073 or the Cancer Council Helpline on 13 11 20 for details.

Unpacking the Career Potential of Students with Asperger’s

This is a great professional development opportunity to assist with supporting students with Asperger's on their career journey.

The conference program aims to support career practitioners, teachers and support staff who work with young people with Asperger's understand the disability in the context of career development.

The workshops will offer practical and achievable intervention strategies to address a range of specific and identified needs in relation to student career development.

Guest speaker Associate Professor Amanda Richdale of Latrobe University has had more than 20 years working in the field of Autism.

This has shown her the many difficulties that people with Asperger's have to overcome to participate in our society. This program will help to develop practitioners and teachers knowledge of this disability and the impact on their education, training and employment opportunities.

Date 12 November 09:00am until 04:00pm
Cost $200 Incl. GST
Venue University of Melbourne, 442 Auburn Road, Hawthorn
Contact Name Leah Pappas
Contact Phone 9810 6400
Contact Email
Download Flyer

Mindfulness in the Workplace 

Workplace Wellbeing Institute presents a ground-breaking training, “Mindfulness in the Workplace”, bringing the latest scientific and evidenced-based research and practical applications that address the areas of; Workplace Stress, Vicarious Trauma, Secondary Traumatic Stress, Compassion Fatigue and Burnout This training is being presented in Melbourne, on the 26th & 27th November, 2014 held at Waterfront Venues, “Victoria Room”, Level 1, 427 Docklands Drive, Docklands. Victoria. For all Booking, Registration and Costs please use this hyperlink the our website.

Inspiring Stories by young Victorians

Click here to read the stories of 60 young people who are making an enormous contribution to life in Victoria.

Young Carer Bursary Programme

The Young Carer Bursary Programme is now open, and young carers aged 12 - 25 can apply for financial assistance to help with education or training.

Click here to find out more!

Free workshops for artists or arts workers with disability

Arts Access Victoria is hosting a series of free workshops for artists or arts workers with disability. Running from 24 October - 15 November, the workshops will cover:
  • How to get your work on Redbubble
  • Photographing and documenting your work
  • RAW LAW - legal rights for artists
  • Online publishing with Writers Victoria
  • Web presence and blogging

RSVPs are essential for these workshops.

For full details and to register for a workshop that interests you click here.
Venue: Arts Access Victoria
Location: 222 Bank Street, South Melbourne
Date: 24 October - 15 November
Time: All workshops start at 10.30am
Cost: Free
Bookings: Call Fiona Cook on 8640 6006 or email

Family preservation strategies
HomeBuilders® Core Curriculum (3-day course)

Learn techniques for working with families in crisis, but will be given an opportunity to apply them. You'll leave with an enhanced understanding and high quality skills for working with families in their own home environment.
When: Wed 19, Thu 20 & Fri 21 Nov 2014 9.15pm - 4.30pm

Where: Melbourne Room Hire Level 1, 446 Collins St, Melbourne VIC

For more info click here.

Free Parenting Support Sessions and Seminars

Parents of children with a developmental delay or disability, aged 2 to 12 years, are eligible for free parenting support as part of the Stepping Stones Triple P Project (SSTP).

Parents can learn the skills and strategies to promote positive child development, teach new skills and manage difficult behaviours over five group sessions and three to four phone sessions.

When: 14th October – 9th December, 12:30pm – 3pm
Where: Annex at Connections, rear car park area, 48 Blackburn Rd, Blackburn

If you’re interested in participating in this project, please contact Jennifer or Pat ph 9724 2222.

SSTP are also conducting free parenting seminars. Topics covered are Positive Parenting for Children with a Disability, Helping Your Child Reach Their Potential,and Changing Problem Behaviour into Positive Behaviour.

When: 23rd October, from 7.30pm – 9.30pm
Where: Monash University’s Clayton Campus

Click here to register for any of the seminars.

Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

This new book examines the history and science of the breast cancer genes. For more info click here.
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