- From the team
- Support group news
- In the media
- Conferences and seminars
- 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 firstname.lastname@example.org
or phone 8341 6315.
New support group!
Support group news
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 minutes
, nomination 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: Sandra.email@example.com
. 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
9th November 2014
SIDS and Kids Walk to remember
10:30 AM - 2:30 PM
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
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: firstname.lastname@example.org
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 email@example.com
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 firstname.lastname@example.org
. Click 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
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
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
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
21st - 23rd November 2014:
International Williams Syndrome Conference
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
5th December 2014:
Australian Twin Registry 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
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
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: email@example.com
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
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 firstname.lastname@example.org
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 email@example.com
to register your interest.
GSNV Small Grants Scheme
Please contact us at firstname.lastname@example.org
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
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)
- 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 email@example.com
or phoning (03) 8341 6315.
For a listing of support groups in Victoria see the links page on the GSNV website: www.gsnv.org.au
to see the GSNV calendar of events.