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on the site is out of date, please email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?
21-11-2009
Leah’s Farewell
As you may be aware, Leah’s last day with GSNV was on Monday 9th November. Farewell drinks and nibbles were held prior to the first meeting of GSNV’s incoming committee for 2009- 2010. Thank-you to those who attended this event; and thanks also to those who have phoned in to thank Leah and to wish her well. We will pass on your messages.
The GSNV Committee and staff also wish Leah all the very best for her future.
For your interest, please see below information on upcoming positions at GSNV. PS. Tarli is not leaving! But will be taking maternity leave from December, and we wish her the best also. PSS. Penny is still here….
GSNV Committee 2009 – 2010
We are thrilled to welcome our new committee. We look forward to introducing them to you in the near future. GSNV has specific criteria to meet in membership of the committee. Two thirds of the committee must meet at least one of the following criteria –
have a genetic condition
be a carrier of a genetic condition
be a sibling of a person with a genetic condition
be a parent of person with a genetic condition
be a representative from a genetic support group; or
be a spouse of a person with a genetic condition.
GSNV has available positions on the committee for anyone that fits any of the above criteria.
If you have an interest in participating on GSNV’s Committee for 2009 – 2010, please contact the GSNV Office on (03) 8341 6315 or email to info@gsnv.org.au.
Cancellation of GSNV Family Day – Sunday November 22nd
Unfortunately, GSNV has made the decision to cancel our Family Day on November 22nd. Basically, our attendance was looking very low, with volunteers significantly outnumbering actual families.
We are discussing the possibility of running a similar event jointly with some other support groups next year, and we will of course keep you informed.
If your group would be interested in participating in a joint event please contact the GSNV office.
We would like to hear from you and about what makes it possible for you and your group to get together with others; also tell us what kind of events and activities appeal to your members; what does it take to ‘entice’ your group to venture out for a day of fun? We’d really like to know, as this will assist us in planning a fabulous Family Day for 2010. Please contact the GSNV Office on (03) 8341 6315 or send us an email to info@gsnv.org.au
If you and your group would like to attend a Fun Family Day please see attached the flyer from the Eastern Parent Support Group. This free event is for families with children with disabilities and will be held on Sunday November 22 from 10.00am – 4.00pm. For more information please contact Jenny Salgo on 9259 4312.
Could you be our new Community Development Team Leader or Education and Peer Support Coordinator?
The Genetic Support Network of Victoria (“GSNV”) is a vibrant and active organisation which aims to maintain a thriving network committed to promoting the interests and well-being of people affected by genetic conditions. The Network is proud to be associated with a wide range of support groups throughout Victoria as well as peak professional bodies such as Genetic Health Services Victoria.
Exciting opportunities have become available for a Community Development Team Leader and Education and Peer Support Coordinator.
GSNV started as a small but enthusiastic organisation run by and for people affected by genetic conditions. It supported around 40 support groups and dozens of people affected by genetic conditions each month.
More than ten years on, GSNV is still run by and for people affected by genetic conditions. We are proud that our Network includes some 140 organisations and supports around 1500 individuals/families per year. This would not be possible without the support of a hardworking team of dedicated volunteers and staff.
As awareness of genetic conditions increases and GSNV continues to become better known, we anticipate that demand for our services will increase even further into the future. Along with supporting the important work of GSNV, I encourage you to become a current financial member so that you can receive all the benefits of membership including:
Free or discount registration for attendance at GSNV Family Days and events, including workshops, seminars & conferences.
Access to GSNV’s Small Projects Grants of up to $400 per year, for projects run by groups that benefit people affected by genetic conditions.
Free newsletters, including; the GSNV Update, the SG (Support Group) News, and regular E News Bulletins; all information-packed newsletters for anyone interested in genetics and supports and resources for people affected by genetic conditions.
Access to nominate for committee positions. (For more information on this please contact Leah Lonsdale on Ph: 8341 6315 or email to leah.lonsdale@gsnv.org.au)
Ability to nominate people for our “Art of...Awards”
GSNV Small grants are open to all current financial members of the GSNV for projects that support the work of a support group. Grants may be used for any once-off project a group may undertake that benefits people affected by genetic conditions. Examples from past years include printing brochures, venue hire, and event catering and library books. GSNV grants may also be used towards administration costs for unfunded agencies.
In order to share the funds among as many groups as possible, projects of $50 to $400 will be considered. The total funding pool available is $1500. If applications received exceed the total funds available, GSNV will do its best to fund as many eligible groups/projects as possible by offering partial funding. If your project cannot go ahead without full funding, please indicate this on your application form.
Peer Support Training - Monday, 10th August, 10am-3pm
Professional Counsellors are helpful, but there is nothing more powerful than talking to someone who has been “in the same boat” as you.
Peer support training is available for all individuals, including staff from support groups. It will be a half day workshop and our aim is to help you feel empowered to listen and talk to others who are facing genetic challenges, and share your wisdom and experience. Download the Peer Support Training flier for more information.
This workshop is free for members, or GSNV joining fee for others ($22, or $11 concession). RSVP by Monday 3rd August 2009 to Tarli on 8341-6315 or tarli.bogtstra@gsnv.org.au to reserve your place.
24-04-2009
Tomorrow is International DNA Day!
DNA Day is celebrated annually on April 25th and commemorates the discovery of the DNA double helix in 1953 and the completion of the Human Genome Project in 2003. We're not too sure how you celebrate your DNA, but tomorrow is the day to do it!
I read this really cool article here once...
We're in the process of collecting all our old Newsletters, Publications, Articles, Reports and Reviews into a single archive on this website. We are not sure we have found everything yet, but it already has enough reading material to keep you going for quite some time. So go, read, enjoy - and if you feel something is missing, drop Catherine an email and she will see if she can find it for you...
GSNV Hall of Fame
This new section of our newsletter aims to acknowledge and applaud the ‘good guys’, people who support, educate or advocate for people affected by genetic conditions. In keeping with the ‘Human Rights & You’ theme of our Genetic Support Awareness Week Seminar held in December 2008 we are very pleased to induct two outstanding individuals into “GSNV’s Hall of Fame”; both work very closely with organisations, including government bodies, to protect the ‘human rights’ of all people including those affected by genetic conditions. So please stop in and read our interviews with our first Hall of Fame members - Anna Forsyth and Frank Hall-Bentick!
Do you know of an individual, group or organisation suitable for nomination for GSNV’s “Hall of Fame”? Please contact Penny via email to penny.dodds@gsnv.org.au or phone the office on (03) 8341 6315.
23-04-2009
The GSNV Update Returns!
It's been a while since the last newsletter because we've been so busy! Now we're catching up we plan to stay more on top of newsletters. However, those of you that receive the newsletter by email will have received some E-Bulletins with "mini updates". We're planning to continue providing brief updates by email so that current information can be circulated in a more timely way. If you currently receive newsletters by mail and would like to receive GSNV Updates - including the mini-updates in between - by email, please email Penny. In the meantime... welcome to our first newsletter of 2009! We have plenty of good stuff to read, so sit down and get comfortable. The contents of the newsletter (and of any mini-updates) will, as always, find their way onto this website over the next couple of weeks, so you can always come back and browse to see what is new and exciting - starting with...
Goodbye and Thanks to Andrew and Amy - and welcome to our new President, Acting Vice President, and Treasurer
We have been so fortunate to have had for several months an outstanding President in Andrew Williams and for 18 months a tenacious Treasurer in Amy Herlihy. It was with great sadness that the staff and committee were recently informed of their need to step down from their roles within the Committee.
On behalf of the GSNV staff and committee, thanks a million Andrew and Amy for your generous and dedicated work - and we look forward to seeing you both in the near future.
Stepping up as our new President is former Vice President Louisa di Pietro, with Moira Rayner joining the Executive as Acting Vice President. Catherine McLean will be endeavouring to continue Amy's wonderful work as Treasurer, leaving Vassie Dandanis alone as GSNV Secretary (with lots of support from Penny Dodds). We wish our new Executive Committee all the best in their new roles!
GSNV on Facebook
The GSNV now has a Facebook 'Cause' to raise awareness and keep interested people up to date with information and events. You can do this by signing up to Facebook and going to http://apps.facebook.com/causes/179132/18600902?m=ac75a943 (or if you are already on Facebook, just click the link at the top of this page to find us). Alternatively, go to 'Causes' and search 'Genetic Support Network Victoria'.
Get your inaugural AGA Newsletter here!
The AGA is an alliance of umbrella genetics/self-help organisations such as the GSNV from around Australia and New Zealand. The alliance is a powerful way our organisations can share information and resources, and work together on common advocacy goals. GSNV was a founding member of the AGA and has taken the role of honorary Secretarat since 2007 (Leah is the current chairperson). During GSNV's term as Secretariat, the AGA has achieved several goals, including:
GSNV is reviewing the way we communicate with you, our members, as well as some of our internal operations. This is creating some delays, including with our newsletter. We thank you for your patience – and invite you to tell us how we can most effectively communicate with you. (Feel free to send examples of excellence!)
12-03-2009
New: Hearing Support Groups in southwestern Victoria
At present there is no group or support that helps people with a hearing loss in the South West. Once a person is diagnosed with hearing loss and provided with hearing aids or further medical treatment, if required, they are on their own at home, socially and at work. With 17% of the population with a hearing loss that effects their communication , there could be as many 10,000 people in the south west area affected.
March will hold the first meetings of the South West Victorian Hearing Support Groups, in Portland, Hamilton and Warrnambool on the 16th, 17th, and 18th of March, respectively. For more information on these groups (including time and venue information), please visit the News Page.
11-03-2009
Mark your diaries for a fabulous 2009!
Welcome to 2009 at the GSNV... it's a bit of a late welcome, but we're really getting moving now. First up for your diaries is a Free Workshop on Legal Information for Carers, to be held on Sunday, March 22nd at the Royal Children's Hospital. Next up is the "Act Now" Youth Health Challenge, starting with a workshop on Sunday, 19th April, and running for three weeks. As if this wasn't exciting enough, Genetic Support Awareness Week kicks off early this year, running from Sunday April 19th to Saturday, April 25th with a theme of spreading the word about genetics and genetic support in the wider community. And as if all this wasn't enough, GSNV Family Day is already on the horizon, with a date set for Sunday, November 22nd... read on for news about these events, and many others...
“ActNow” Youth Health Challenge - For young people aged 16-25 years - Sunday 19th April (workshop)
Challenge runs for 3 weeks
This challenge goes for 3 weeks following the workshop where you reflect and carry out the challenge that you have set yourself. This is achieved using the ActNow website where you can keep a blog, post vox pops and gain support from your mentors. Many of the activities will earn you ‘tickets’ to go into the draw to win prizes at the end of the action challenge. Download the ActNow flyer, or contact the office by email or on 8341 6315 for further details.
Position Vacant: Treasurer (Are you our new Treasurer???)
Our wonderful treasurer, Amy Herlihy, stepped down from her role as Treasurer to focus on her final year of her PhD. We thanked Amy at the committee meeting on Monday night and are delighted that she will be staying involved with the GSNV in other capacities. We are therefore looking for someone to fill the role of Treasurer…is that you???? The key ingredient is an enquiring mind (to ask staff about all those items billed to Vanuatu!). If you are keen but feel your financial skills are rusty, GSNV is happy to send you on a course for people looking after community group finances. The Treasurer is also a member of the GSNV Executive committee. Nominations will be discussed at the next committee meeting (Monday 6th April). Please think about the position and let us know if you might be interested….or if you know someone else who might be. For more information, please feel free to contact the President, Andrew Williams (phone 0417 346 863, email andrew.gsnv@ozed.org.au ) or Amy (phone 8341 3670, email amy.herlihy@mcri.edu.au ).
Symposium: Is Genetics Still Special? March 24, 2009
The Children's Bioethics Centre, The Australasian Sociological Association and Genetic Health Services Victoria invite you to a symposium: Is genetics still special? Examining the evolving social and ethical context of genetic health care.
Topics include
The role of genetic counselling in a mainstreamed genetic future (Mary-Anne Young, Peter MacCallum Cancer Centre)
How can the ideal of informed consent be upheld in a mainstreamed context? (Sandy Taylor, University of Tasmania)
Is there a right not to know in an era of therapeutic possibilities? (
Berge Solberg, The Norwegian University of Science and Technology)
Snapshots of future genetic practice? (Panel of genetic health practitioners)
Genetics and the promise of personalised medicine - how will it work? (Alan Petersen, Monash University)
Personalised medicine the issues are all in the timing
(Nina Hallowell, Public Health Sciences, University of Edinburgh)
Date: Tuesday 24th March, 2009
Time: 2:30pm - 6:30pm
Place: Ella Latham Theatre, Level 1, The Royal Children s Hospital, Flemington Road, Melbourne
Registration is free and all are welcome, however please RSVP to tina.romanin@rch.org.au if you plan to attend, so that catering can be provided.
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