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Welcome to the GSNV web site! Please take a look around. If you cannot find what you are after, or if you notice that information on the site is out of date, please email Catherine to let us know. Happy surfing!

What's New at the GSNV?

2-7-2008

CleftPals Victoria Hosts National Conference - Saturday 19 July

A fascinating day for parents, medical and allied health professionals and anyone interested in clefts and cleft issues. Speakers include

Derek Croft, Psychologist
David Chong, Surgeon at Royal Children’s Hospital
Tania Lacy, comedian / parent
Graeme Wallace, Operation Rainbow

Lunch, refreshments and creche provided. FREE entry - RSVP for catering and to book creche to cleftpalsvic@hotmail.com , or visit the website at www.cleftpalsvic.com for more information.

1-7-2008

Green PC supporting Learning for Life

Infoxchange's Green PC, in partnership with The Smith Family, is helping to get low-income earning families online in communities of Queensland and Victoria. Parents with a primary school aged child on the 'Learning for Life' scholarship program can purchase a fully refurbished computer with licensed software and an unlimited dial-up 12 month internet connection for just $100. More information can be found at http://www.greenpc.com.au and http://www.xpand.net.au, or contact Claudio Angelucci at claudio@infoxchange.net.au

Sharing the Load - Steps for Young People and Families in Managing Chronic Illness Forum - Monday August 26th 2008 4pm - 7:30pm at the Ella Latham Theatre, Royal Children's Hospital.

Sharing the Load is a forum for adolescents and their parents. The forum will cover topics related to increasing self management and chronic illness. It's an opportunity for young people, their families and health professionals to come together and share ideas and learn from each other about taking steps towards adulthood living with a chronic illness.

For bookings and registration please contact reception at the Centre for Adolescent Health on 03 9345 5890 by August 12th 2008. (Please note: only for young people who currently attend or who have attended RCH)

Australians with terminal medical conditions to receive superannuation Lump Sums Tax Free.

The Minister for Superannuation and Corporate Law, Senator the Hon Nick Sherry, announced on Thursday, February 14, 2008 that the Government will legislate to make superannuation lump sum payments tax fee where paid to persons suffering from terminal medical conditions. Details of this are expected to be released shortly. Contact Shane May 0402 958 743. Spokespersons: Senator Nick Sherry, Minister for Superannuation and Corporate Law.

Research: Investigating how men and women understand inheritance, genetic risk and genetic testing.

A new research study, funded by the Australian Research Council and conducted from Central Queensland University is investigating how men and women understand inheritance, genetic risk and genetic testing.

Genetic medicine and genetic testing are becoming increasingly common within the Australian health care context and have the potential to bring many health care benefits to people in the future. Genetic tests are increasingly being used to establish individuals’ risks of developing certain conditions during their lifetime. How people understand and respond to genetic risks and genetic testing are important issues. Knowing more about this will help us develop health care policies and services that are relevant to people who have family histories of inherited conditions or whose genetic risks can be identified through genetic testing.

The research will involve people who are aged 18 years or older who have a specified genetic risk for an inherited adult-onset condition that runs in their family. The main focus of the study is upon individuals who have an identified genetic risk for inherited adult onset conditions rather than individuals who may be experiencing symptoms of a condition.

This study has been cleared by the Human Research Ethics Committees of Central Queensland University and is being conducted in accordance with the National Health and Medical Research Council's guidelines.

If you are interested in being interviewed, please contact: Associate Professor Sandra Taylor, Centre for Social Science Research, Central Queensland University Rockhampton Q 4702; Phone: 07 4930 6598

24-6-2008

New Newsletter!

Our June-July newsletter can now be downloaded in PDF form from the News and Events section of the website. Features include the long-awaited Family Day Report (with photos - check it out on our Family Day page), and Leah's inside report on the recent Involving People In Research Symposium. Other articles from the newsletter are being posted on this site daily, so keep an eye out.

Genetics - In the News

You may have read in The Age on June 3 an article by Matthew Ricketson titled “Seven apologises for incest episode.” This article was in response to an episode of “All Saints” broadcast by Channel Seven that linked incest with Down Syndrome.

The article goes on to say that “Catherine McAlpine, from Down Syndrome Victoria, said one boy had already been victimised in Queensland.”. The article also stated that “Dr David Amor, leader of the clinical genetics research group at Murdoch Children's Research Institute, said yesterday the All Saints storyline was implausible. “There is absolutely no increase in the risk of Down syndrome or of other chromosomal conditions for the offspring of incestuous relationships," he said.”

Down Syndrome Association Victoria conveyed that the apology did not go far enough and called for a public apology to be aired prior to screening of the next episode of the drama.
To voice support for this issue, GSNV Coordinator Leah Lonsdale and GSNV President Carly Myers penned a letter to the editor of a daily newspaper voicing concern around the impact of the negative portrayal of people with genetic conditions.

In the letter Leah stated that “People with genetic conditions lead enjoyable, productive and fulfilling lives and are valued members of the community. Most of us know at least one person who has a genetic condition – but we may not know that they are affected because not all genetic conditions are ‘visible’. The Victorian Human Rights Charter guides us in the key principles of freedom, respect, equality and dignity. We as a community must uphold these principles and be mindful of the potential for discrimination.”

Unfortunately the letter did not get published, but we hope that by sharing our efforts; we may inspire in your advocacy efforts.

11-6-2008

2nd Short Stature Symposium - Sunday 29 June

Genetic Health Services Victoria and the Short Statured People of Australia cordially invite you to attend the 2nd Short Stature Symposium will be held at the Ella Latham Theatre, 1st Floor, Royal Children’s Hospital, Parkville on Sunday 29 June, 2008 from 10:00 a.m. to 3:30 p.m. There will be a variety of speakers including:

Margaret Sahhar, Senior Social Worker, Genetic Health Service
Dr Margaret Zacharin, Endocrinologist, Royal Children’s Hospital
Members of the Short Stature Community
Forum where questions can be asked of expert panel members

Please RSVP to maureen.ralph@ghsv.org.au or Telephone 8341 6244 by Monday 16 June, 2008. Unfortunately no childcare is available

Seminar - How to manage your money - Wednesday 2 July

As part of their Independent Living Skills program, the Spina Bifida Foundation of Victoria (www.sbfv.org.au) is running a seminar on "How to manage your money" with Financial Counselling Victoria.

Some of the topics that will be discussed are:

Pitfalls to be aware of in the marketplace
Utilities, fines, credit cards, Capital Grants, No Interest Loan Scheme
Internet Banking, saving, budgeting
Basic money management skills

Time: Wednesday, 2nd of July, 10:30am - 2pm (Lunch provided). Place: Hayden Raysmith Room, 4th Floor, Ross House, 247 Flinders Lane, Melbourne 3000. Cost: Free for members, $5 for non members.

RSVP: By 25th June 2008 to Mini on (03) 9663 0075 or email m.dahiya@sbfv.org.au for more

28-5-2008

GSNV Membership Drive

Thanks for being a member of the Genetic Support Network of Victoria (GSNV) during 2007/2008. I invite you to renew your membership for the coming year. If you are “just” on the mailing list, visiting the website, or have let your membership lapse, I encourage you to become a current financial member so you can receive all the benefits of membership. Financial membership is just $22 per year ($11 concession) for individuals or families.

GSNV in 2008/2009

2008/2009 is shaping up to be an exciting year ahead, with our third Genetic Support Awareness Week to be held in December. In May and June 2008 GSNV will hold workshops on Starting Support Groups and Thinking Outside the Square: Alternative Funding Sources for Groups. GSNV Family Day, Coffee Mornings and a Motorcycle Event with riders from the Victorian Masonic Motorcycle Association were popular events in 2007/2008 and plans are underway to hold these inaugural events in 2008/2009. The SG News, the GSNV Update and our website continue to be valuable sources of information for organisations, support groups and people affected by genetic conditions. GSNV was pleased to assist with the set-up of support groups and to assist with enquires from individuals, support groups and organisations, we logged nearly 100 enquiries per month! With the financial assistance from members, GSNV gave $3,000 in Small Grants to member groups in 2007/2008. GSNV continues to inform, educate and advocate with representation on genetics issues at government and service planning levels.

To renew your membership, please download and complete our Membership Renewal Form and return, with your payment, to GSNV. If you have any queries, or would like to update your contact details, please phone me or Leah Lonsdale on (03) 8341 6315 or email leah.lonsdale@gsnv.org.au

Please ignore this request if you have recently paid your membership for 2008/2009 or if your membership status is that of an Associate or Reciprocal.

2-5-2008

Family Day - THANK YOU!

A big thank you to all those who attended, helped out, and sponsored the GSNV Family Day on April 13th. It was a great day - our best yet - and it couldn't have happened without you.

Special thanks to Limnos Butchers, who provided us with delicious sausages, the Sammy-Joe Foundation, who provided pizza, to the Victoria Market, who donated platters of fresh fruit and to our trusty volunteers, Tammy Allen, Rose Atkins, Michelle Howson, Andrew McLean, Elise McLellan, Mrs McNamara and son, and Tessa Raffainello - not to mention all our wonderful Committee members! - for helping out on the day.

Stay tuned for the exciting Family Day Report (coming soon to a newsletter near you).

Sign your name for AUSLAN (Australian Sign Language)

Australians are being asked to sign their name to a petition for more funding and support for Signing children, who currently exit the education system with poor communication and literacy skills. As part of the education revolution the government is evaluating the funding needs of children with a disability. Auslan is a poorly funded area, yet so vital to many children within Australia.

An online petition has been started, which will be presented to Deputy Prime Minister Julia Gillard. If you support Auslan, please support our petition and sign your name.

3-4-2008

GSNV Special Projects Grants 2008

In 2001, GSNV was fortunate to receive a donation from the Multiple Epiphyseal Dysplasia support group. These funds were made available to groups and individuals within our network to fund special projects. The program was so successful we have continued it each year, with funds from donations and membership fees. This funding can be used for any once-off project that benefits people with genetic conditions. Examples from past years include printing brochures, venue hire, event catering and library books.

Applications close Friday 11th April 2008. Information and an application form can be downloaded here, or phone Leah on (03) 8341-6315 or email leah.lonsdale@gsnv.org.au . Apologies for the late notice - the Webmistress is still trying to catch up on the backlog...

Don't forget to RSVP for GSNV Family Day!

Family Day is only 10 days away (April 13th), which means there's only a couple of days left to RSVP! Don't forget to call Leah or Penny on (03) 8341-6315 or email leah.lonsdale@gsnv.org.au to reserve your piece of Train Cake!

Are you an aspiring artist?

Mark is a 21 year old artist, who is keen to share his passion for art by running drawing/sketching/cartooning classes for people in the genetics community. If enough people are interested, he’ll organise some art classes (possibly either on a Wednesday or weekend). This opportunity is open to people affected by genetic conditions, parents, siblings and anyone in the Genetics community. To register your interest, please contact Leah at GSNV on (03) 8341 6315 or leah.lonsdale@gsnv.org.au .

Williams Syndrome Research

Ever wondered about the day-to-day living skills and abilities of other adults with Williams syndrome? Researchers at the Royal Children’s Hospital are trying to find out more about this important topic because we know very little about the long-term adjustment and lifestyle needs of people with Williams syndrome. To do this we need your help! We are inviting you to participate in a study looking at the thinking and lifestyle skills (e.g. domestic, leisure) of adolescents and adults with Williams syndrome. The project involves one attendance at the Royal Children’s Hospital, where you will meet a genetics doctor and a psychologist. For more information, please contact Ms Annette Da Costa on (03) 9345 5390 or Professor Agnes Bankier on (03) 8344 6261.

Summer Heights High: What are your dreams, hopes and challenges for 2008?

Danny, 18, plays Toby from the hit ABC TV series Summer Heights High. Danny recently received one of the highest honours in Hobsons Bay, the city's Young Citizens of the Year, in recognition of being a shining and `inspiring’ example to others.

“A student with Down syndrome, Danny is part of the council's Be Yourself program; a recreational-based support program for young people with mild to moderate disabilities,'' Hobsons Bay Mayor Bill Baarini as reported in the Maribyrnong Leader in Wednesday February 6. “Danny's involvement in Summer Heights High is an inspiring example of how anyone can follow their dream, regardless of a disability.'' See http://www.hobsonsbayleader.com.au/article/2008/01/28/28408_wtv_news.html for the complete story.

This inspired some of us from GSNV to share our dreams for the year ahead. Read more...

18-3-2008

Have you missed us?

We've missed you too.... Unfortunately, due to server problems, we've been offline since Christmas. We're slowly catching up on a backlog of things that need to be added to the website, starting with our exciting Family Day (coming up on April 13 with a train theme). We apologise for any events we've missed during this time. Over the next few weeks, we'll be bringing ourselves up to date, but it may take a little while.

There have been visitors to this site since 22 May, 2006