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on the site is out of date, please email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?
19-12-2006
GSNV Office Closed from December 20 - January
16.
The GSNV office will be closed from Wednesday, December 20, and
will re-open on Tuesday, January 16, 2007. We wish you all a happy
and relaxing festive season, and look forward to catching up with
you in the New Year!
Holiday Silliness...
Because we know that this time of year can be as stressful as it
is enjoyable, this week's useful links are straightforwardly silly...
try out a Christmas
Cake Recipe for the stressed , Christmas
Tree decorating with cats helping (this has a lot of photos,
but is worth the wait), or, just for fun, check out these online
jigsaws - much less messy than the kind that come in boxes,
and no chance that the pieces will get lost!
We have been advised that Siblings
Australia will be forced to close in the New Year unless immediate
funding is secured. At the November meeting last week,
the Siblings Australia Board of Management reluctantly agreed that
steps must be taken to wind down the organisation. Their Office
Manager is now on indefinite unpaid leave and, from the start of
the New Year, the Director, Kate Strohm, will be working voluntarily,
with some others, to manage critical tasks and continue to seek
funding. Their limited remaining funds can then be stretched to
cover rent, phone and insurance commitments for a few additional
months in 2007.
Please visit our Advocacy
News Page to find out how you can help - Siblings Australia
is a unique and important organisation that helps a great many people
who are not otherwise reached by support services, and we would
be poorer as a community without their presence.
Congratulations Carly!
The more perceptive among you may have noticed that our illustrious
President has changed her last name... The wedding was way back
in November, so we're a bit behind the times in saying this - but
congratulations Carly! We wish you every happiness now and for the
future.
27-11-2006
GSNV Family Day
It's been a few weeks since we updated the site, because we've
been running around like mad things preparing for yesterday's Family
Day and Christmas Picnic! But all the running around was worthwhile
- more than thirty adults and twenty children attended (not counting
Santa!), the weather was perfect, and everyone had a fantastic time.
Watch this space for a report, including photos of the day...
Genetics and Support Groups in the News
We spotted two articles of interest to our members in the news
yesterday... Sunday's Herald Sun had
a feature on Epidermolysis Bullosa , and the ABC News presented
a story about research into a
possible treatment for Cystic Fibrosis . Have you read or seen
anything in the media recently that you think would be interesting
to the GSNV's membership? If so, drop us an email, and we'll put
a link to it here. Who knows? Maybe we'll need to start a media
page...
06-11-2006
GSNV Newsletter
Our November-December newsletter is now available for download
from our news page. But
what are you doing downloading it? You should have received it by
email, or be getting it by post... If you haven't got your own copy,
now would be a good time to call the office and check that we have
your address right - or to visit our membership
page so that you can join the GSNV and get the newsletter sent
to you every two months.
GSNV Family Book
Have you thought about contributing to our Family Book? Our first
'Family Book Extract' is featured in the November-December Newsletter
- we hope it will inspire you to write something of your own. We
are seeking photos, drawings, stories, poems, words of wisdom, or
anything else that reflects who you are – and, ultimately,
who we are. You can spend five minutes or five hours on your contribution
– our goal is to have something, small or large, from everyone
involved with the GSNV! Download
our flyer and put on your thinking caps… we’re looking
forward to hearing from you!
30-10-2006
GSNV Family Day and Picnic
Have you RSVPed yet for our Family Day and Christmas Picnic (Sunday,
November 26)? Our office is beginning to overflow with goodies for
the kids - and we are developing grandiose plans for the sausage
sizzle, not to mention cake! Give the office a call on 8341 6315,
or drop Catherine an email,
and let us know that you're coming - and how many people you are
bringing!
New Page for Support Groups
Are you thinking of starting a support group? Or have you started
one, and are wondering how to get incorporated, where to get funding,
or what to do next? Our new page 'For
Support Groups' will hopefully be a place where you can find
answers to your questions... it's still quite small, but we'd love
to hear your suggestions on what you'd like to see there.
24-10-2006
Victorian State Election Special
With the State Election approaching, we've done a tour of the websites
and policies of the contesting parties, focusing on health, carers,
and education for special needs children. If you like voting below
the line, or just want to know who all the different parties are
and what they represent, check out our election
page - we've listed all the parties, with links to their websites
and policy pages, as well as highlights from some of their policies
- dirty work, but somebody has to do it! We've avoided political
commentary though, so you'll have to do that part yourself...
16-10-2006
Advocacy page undergoes mitosis!
The brand new Advocacy Page,
listing advocacy organisations and useful links now has a sister
page for Advocacy News.
Only one item of news so far, but it's a big one - go have a read
and find out what the UN has to say about the rights of persons
with disabilities...
9-10-2006
Handy websites - fundraising and
'bookmarklets'
You can tell when Catherine and Leah have been surfing the internet,
because GSNV's Useful Links suddenly become even more useful! We
have two new sites for you this week... The Australian Fundraising
Ideas site at www.fundraisingideas.com.au
has heaps of ideas (ranging from the briliant to the rather strange)
for all sorts of fundraising occasions. And for those of you who
are interested in website accessibility, www.bookmarklets.com
and www.squarefree.com/bookmarklets/zap.html
are definitely worth a look - they contain links that you can use
to change the appearance of a website you are looking at (ie, to
remove images, change the background or font colours, make the text
bigger, or make a page printer-friendly) simply by adding them to
your bookmarks and clicking on them when viewing a website. In addition
to improving accessibility, this site is a brilliant tool for procrastination...
03-10-2006
New Committee!
A warm welcome to the 2006-2007 Committee of Management, which
met for the first time last night, and in particular to our brand
new Executive Committee, consisting of President Carly Weber (SSPA),
Vice President Tony Briffa (AIS
Support Group), Treasurer Sharon Lewis (Genetic Health Services
Victoria), and Secretary Andrew Williams (OzED).
Our new General Committee Members are Rosey Boyd (ALDS),
Sarah Gliddon (CFV) and Penelope
Myers (Glenroy FMS Self-Help Group Organisation). Returning members
are Marjorie Cresp (Porphyria
Association), Deborah Dalton and Susan Fawcett (Genetic Health
Services Victoria), Margaret Harris (Dept. of Human Services), Leah
Lonsdale and Catherine McLean (GSNV) and Tony McDonald (DSAV).
We look forward to working together to advance the GSNV in the coming
year.
New Brochures!
We've recently updated our GSNV brochure and had it translated
into 10 community languages - Arabic, Cambodian, Cantonese, Dari,
Indonesian, Mandarin, Serbian, Sinhalese, Turkish and Vietnamese.
Check out our new brochures
page (in the About Us section of our website) to download information
on the GSNV in the language of your choice.
26-09-2006
New Advocacy Page
Have you had a look at our brand
new advocacy page? This page contains a list of organisations
that specialise in providing advocacy - or training in self-advocacy
- to people and families with genetic conditions and other disabilities.
It's very much a work in progress, so there are undoubtedly plenty
of missing links... if your favourite advocacy group isn't there,
please email Catherine
and let her know - she'd love to see this page become as encyclopaedic
as our support group page.
Support Groups List Update
We are currently updating our list
of support groups. Between our database and our websearching
skills, we're getting a pretty complete list of groups and their
contact details - but we need your help to make sure the list is
complete! If you represent a support group, please visit the page
to check that the details we have for you are current. Not on our
Support Groups page? Email
Catherine with your details and she'll be delighted to add you.
GSNV Family Book
Did you know that the GSNV is turning 10 this year? To celebrate
our birthday, we are asking YOU to help us create a GSNV Family
Book. We are seeking photos, drawings, stories, poems, words of
wisdom, or anything else that reflects who you are – and,
ultimately, who we are. You can spend five minutes or five hours
on your contribution – our goal is to have something, small
or large, from everyone involved with the GSNV. Ambitious? Of course!
We’ll be collecting contributions over the next year or so,
and will seek funding to make a print run of the book when it is
complete, so we can have a concrete record of the GSNV Family at
10 years. As an ongoing part of this project, we will also have
a special ‘feature’ in each GSNV update, showcasing
a recent contribution – to inspire you! Download
our flyer and put on your thinking caps… we’re looking
forward to hearing from you!
GSAW Report
Genetic Support Awareness Week has come and gone, but the pictures
live on... visit the GSAW page to read about
our special seminars, see pictures of support in the square, and
read about the amazing recipients of our Art Of... Awards.
Old News...
Missed a newsletter? Looking for an old article or information
on a past event? Check out our new Newsletter
Archive and take a trip down memory lane...
... and No News...
Wondering why you haven't received any newsletters recently? It
could be because we don't have your current postal or email address...
We get quite a lot of returned mail and email after every mailout,
but it can be difficult to redirect things if we don't know where
you've gone! Remember, our database is only as good as our information,
so please let us know when you move house.
Give me more GSNV News!
For information on upcoming events, or to download the current
newsletter, visit our news
page, or for an overview, have a glance at our events
calendar - this close to the end of the year things are pretty
quiet, but that won't last long! Not on our mailing list? This is
very easy to fix! Visit our membership
page and sign up to become a part of our organisation.
There
have been
visitors to this site since 22 May, 2006
We keep our website as up-to-date
as possible .
Any feedback or comments you would like to make are most welcome. Click here to send us an email
Last Updated
03-Apr-2008
. Authorised by Leah Lonsdale. Enquiries: Leah Lonsdale
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