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on the site is out of date, please email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?
24-12-2008
Season's Greetings from the GSNV Committee and Staff
From the GSNV President:
Dear GSNV Members and Friends,
2008 has seen some amazing achievements by the Genetic Support Network of Victoria.
GSNV continues to provide fantastic support services to the Victorian community. These services include advocacy, information, referral, advice, education and of course support for individuals and families affected by genetic conditions.
2008 concluded with the Genetic Support Awareness Seminar held on December 9th at the Royal Children’s Hospital. This free public seminar consisted of 9 of the most fantastic speakers who spoke on the topic of ‘Genes: Rights, Wrongs and Responsibilities’. The speakers were not just extremely knowledgeable, but had a true passion for their particular area of expertise and/or personal experiences. It was a fantastic night and an absolute credit to all that were involved in the organisation and execution of the night. A full report will be included in our February newsletter.
2008 has also seen some challenges. The GSNV staffs continues to grow and with growth comes challenges, such as office space, human resource management and ensuring that our brilliant staff have all of the tools necessary to provide all of these services to our members and the Victorian Community.
Well, with 2008 drawing to a close, we are looking excitedly to 2009. Our committee has a significant mix of new members, which has bought some amazing new ideas, for example GSNV will be creating a “Facebook” site to ensure that we can reach younger people.
2009 will also bring some challenges. We will be tackling the office space issue as well as ensuring that we create the internal framework for our staff to be able to meet the requirements of our members and the Victorian Community.
2009 is going to be a busy time for all of the committee and I would like to take this opportunity to invite you to be a part of it. We are seeking people who would like to be involved on GSNV sub committees. Please let us know your particular interests and skills and we will accommodate.
I would like to take this opportunity to thank everyone who has volunteered with GSNV, our staff, our professional friends and our members for all of their support in 2008 as we look forward to 2009.
I would like to wish everyone a happy Christmas and New Year. Enjoy the season and stay safe as we look forward to a massive 2009.
Andrew Williams, GSNV President
16-12-2008
GSNV Office Closed for Holiday Period - December 24 to January 26
The GSNV Office will be closed from 5.00pm on Tuesday December 23rd and will reopen at 9.00am on Tuesday January 27th. The GSNV answering machine and emails sent to info@gsnv.org.au will be checked periodically until the GSNV Office reopens. In an emergency, Genetic Health Services Victoria has an after-hours service that is available by contacting the Royal Children’s Hospital switchboard on 03 9345 5522, the Geneticist on-call will be contacted.
We wish you a restful and enjoyable holiday season, and a happy and healthy new year.
Congratulations to the 2008 GSNV Art Of.... Award winners!
The Art of Listening focuses on the importance of caring, receptive professionals in the lives of individuals and families living with genetic conditions, and increases awareness of listening as an invaluable key to understanding and helping. This award celebrates healthcare providers who take the time to listen and understand, thus profoundly easing the difficult, often frustrating journey faced by families dealing with the uncertainties and ambiguities of a genetic diagnosis. We congratulate Dr Sally Hanson, Art of Listening Award Winner 2008 and thank her for her continuing support of people and families with genetic conditions. We also acknowledge and thank nominees Thomas LaManna and Anne Jessop, our runners-up in this category.
The Art of Learning acknowledges professionals in education or the media who exemplify the compassion and caring that is so important in explaining and reporting on genetic conditions. This award heightens awareness of the fine line between education and exploitation, and of the sensitivities that surround writing about people with genetic conditions. It is intended to build awareness of genetic issues by highlighting the responsibility to report fairly and impartially about developments in genetics and the impact of these discoveries on people’s lives. We congratulate Ms Carly Myers, Art of Learning Award Winner 2008 and thank her for her continuing support of people and families with genetic conditions. We also acknowledge and thank nominees Louisa Di Pietro, Tony Jackson and Dr David Amor, our runners-up in this category.
The Art of Advocacy pays tribute to the visionary and passionate grassroots leaders who tirelessly work for improved healthcare, information, support services and quality research for their specific condition through support organisations. GSNV supports these organisations and their leaders, offering resources and assistance when needed. These leaders respect the uniqueness of each individual’s challenge and solution, create relationships between groups, and bring their group’s issues and priorities to the attention of the health professionals, research communities and government departments. We congratulate Mr Satirios Katakouzinos, Art of Advocacy Award Winner 2008 and thank her for her continuing support of people and families with genetic conditions. We also acknowledge and thank nominee Victorian Masonic Motorcycle Association/Larry King, our runner-up in this category.
The Art Of... Awards are proudly Sponsored by Genetic Health Services Victoria
9-12-2008
GSNV Christmas Cards!
For the first time, GSNV is selling Christmas Cards! The cards are printed by our.community.com.au, and not only do they support the GSNV, they are environmentally friendly, too! You can order your cards in packs of ten using this order form, or order them individually from the GSNV office (03 8341 6315). Cards are $3 each, including postage. Using GSNV Christmas cards supports us two ways - we receive $1 for each card you buy, and each card you send with our name on it helps spread awareness of our organisation.
If you haven't bought your Christmas cards yet, please consider whether a GSNV card would suit you.... and if you are much more organised than us and got your Christmas cards weeks ago, perhaps you would like to be more organised still and get your 2009 Christmas cards a year in advance!
12-11-2008
Support the GSNV with your Christmas Shopping!
Oh, we are just too efficient here, talking Christmas Shopping in November! But have you visited our Self Fundraising site? Basically, it's an online shopping centre where you can buy all kinds of gifts - clothes, books, chocolates, hampers, flowers, toys, little pirate treasure chests filled with chocolate coins, or practically anything else you can think of - and the shops donate a percentage (usually around 5%) of the money you spend to the GSNV. Also, you get to avoid crowds, long queues, sore feet, and bad piped Christmas music, which are all pretty good things to avoid if you can.
We hope you enjoy the website, and can help support the GSNV this Christmas!
Transition
Are you transitioning from paediatric to adult hospital services in Victoria, or do you know someone who is? The Royal Children's Hospital has an excellent website on Transition to Adult Health Care, with information for parents as well as young people. Or, for a preview of Transition at the RCH and contact details, have a read of Leah's recent newsletter article online.
10-11-2008
German born Dr Bernhard Moeller and his family refused
permanent residency because their son Lukas has Down syndrome - PETITION at Down Syndrome Victoria website
Down Syndrome Victoria has launched an online petition
calling for the Department of Immigration to urgently review
the Moeller case.
“We wanted to give the community a way to express their outrage
regarding this disgraceful and discriminatory decision,” said Executive
Officer Catherine McAlpine.
“We urge everyone who has been touched by this story to sign the petition
and let the government know this practice has to stop.”
The petition can be signed at www.downsyndromevictoria.org.au
For more information please call Catherine McAlpine on 0419 530 524.
We are sad to farewell Marjorie Cresp, Sharon Lewis, Susan Fawcett, Sarah Gliddon, Penelope Myers and Ingrid Winship from the Committee this year. We thank them for their work with us over the last year (over the last many years in some cases!), and hope that we will see them on the Committee again in the future.
23-10-2008
Help us stay up to date!
Is your support group listed on our website? If so, are the website and other contact details correct? We try to keep our support group listing as up to date as possible, so that people can find relevant groups easily - but we need your help to do so. Email
Catherine to update your listing, or to add your group event to our News Page.
22-10-2008
August/September Update
You thought it would never happen, but the August/September Newsletter is now online, just in time for the release of the October/November one... Articles from the newsletter are being merrily strewn across the website as you read this, so there are lots of new things to read.
WANTED: Families who have experienced problems in obtaining vital equipment, resources or funding for children with life limiting / terminal illnesses
"We are a group of parents of children with terminal illnesses who have (and continue to) experience significant hurdles in obtaining basic equipment and resources for our kids. These delays have usually revolved around long waiting lists, lack of funding, miscommunication or just plain 'red tape'. We believe there is no place for waiting lists and red tape when you have a child with a significantly reduced life span. Months waiting for a shower ramp? hand rails? hoists? wheelchairs? therapy funding? The pressure on our families is already incredibly significant, and these added stresses contribute to family break-down, injury to carers and/or their children, depression and feelings of helplessness, significant financial burdens......and of course prevent us from what we want to be doing most - providing the best possible care and quality of life in the time we have with our kids.
We would like to see the issue of WAITING LISTS and provision of EQUIPMENT & RESOURCES for terminally ill children brought to the forefront of public and healthcare awareness. There is NO ROOM FOR WAITING LISTS in our particular world."
We are inviting any other families who have experienced such issues to send an email relating their particular experience/s (please be as specific as you can) to the email address below, so that we can get a really broad cross-section of "real life" examples together. We ask that you include your name and contact details in case we need to clarify anything with you, but will not be using your personal details in any subsequent correspondence without permission from you.
We invite nominations for people who have made outstanding contributions to the lives of people affected by genetic conditions in the areas of:
information/education (The Art of Learning),
support (The Art of Listening),
and advocacy (The Art of Advocacy,
these being our guiding principles. The premise for each award is outlined in the Art Of... Flyer (downloadable here for your convenience!).
Does any of this remind you of someone in particular?
To make a nomination, please write a letter explaining why you feel this person should be recognised with one of these awards and their particular involvement with your support group or your family. Nominations must be received by Friday 31st October 2008. Recipients of the awards will be selected by a panel and will be honoured with a gift, certificate and trophy at our Genetic Support Awareness Week Seminar on Tuesday December 9th 2008. All nominees will receive a certificate of recognition.
Please keep your nominations to 500 words.
Please send your nominations in writing to:
The Art of… Awards
Genetic Support Network of Victoria
PO Box 1100
Parkville 3052
For more information please call the GSNV Office on 8341 6315.
24-9-2008
Annual General Meeting - Monday October 6th
GSNV's Annual General Meeting is coming up very soon! The meeting will be held in the Conference Rooms on the 10th Floor of the Royal Children's Hospital, Flemington Rd, Parkville, from 6-8pm. Elections of the new GSNV committee will be held at this meeting, and a light supper will be provided afterwards. All members are welcome!
Please RSVP to Leah, Tarli or Penny by calling 03 8341 6315, or by sending an email to info@gsnv.org.au
Genetic Health Services Victoria brochure library
Genetic Health Services Victoria now has all their brochures available online. Brochures include frequently asked questions, information about privacy, and information about screening, prenatal testing, and four common genetic conditions. They also have our brochure, which is a great reason to visit the site on its own, right? Several of their brochures are available both in English and translated into ten community languages. Follow this link to visit their brochure library.
Long time since you heard from us?
Perhaps you've moved house, or changed internet service providers? Newsletters are currently on a two monthly cycle... if you haven't heard from us in longer than that, it probably means we have an incorrect address for you. Contact the office on 8341 6315 to get your details updated.
Long time since we updated this site?
Yes, we're sorry about that. Our webmistress broke her leg, and since she does all her programming with her feet, this was a real problem for updates... Or perhaps it was more a problem of computer access. In any case, she is back on the job now, and will hopefully bring the website back into order over the next few weeks. Stay tuned!
17-7-2008
Connecting Families?
Are you affected by a rare condition that does not have a support group? Perhaps you should check out our New Support Groups and Connecting Families page... it does just what it says - lists brand new support groups, and messages from people seeking to connect with others affected by the same condition. Nothing there for you? You can add your own message to this page by calling the office on 03 8341 6315, or emailing info@gsnv.org.au.
8-7-2008
Welcome Tarli Bogstra - our new Genetic Support Worker!
We are very excited to welcome Tarli, our brand new Genetic Support Worker. Tarli's background includes community education, case management and genetic counselling, and she will be available in the GSNV office on Mondays, Wednesdays, and Fridays to provide support, referral and advice to people and families affected by genetic conditions - as well as to support groups, and other interested parties. Read Tarli's profile, or drop her an email on tarli.bogtstra@gsnv.org.au.
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.auor 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.
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
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We keep our website as up-to-date
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Any feedback or comments you would like to make are most welcome. Click here to send us an email
Last Updated
24-Dec-2008
. Authorised by Leah Lonsdale. Enquiries: Leah Lonsdale
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