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on the site is out of date, please email
Penny to let us know. Happy surfing!
What's New at the GSNV?
01-03-2010
From the GSNV President and Vice-President
Welcome to 2010. We start a new year with new staff and a new committee
and a whole lot of new opportunities and challenges. Fortunately
this has stirred up a lot of new ideas and energy as well.
The Genetic Support Network of Victoria was set up to meet the needs
of our members and the wider community affected by genetic conditions.
We hope that 2010 will launch us on the next stage of our action
for change.
Thanks to Lord Mayor’s Trust, at long last we can update the
GSNV website and our database so we can far more efficiently share
news with you all. We are also able to offer you more and more extensive
Peer Support Education Training Workshops, which were well received
and attended in 2009, in this and following years.
GSNV represents your interests at the Australasian Genetic Alliance,
the Chronic Illness Alliance, the Collective of Self Help Groups,
on the Department of Human Services’ (DHS) Genetics Services
Advisory Committee and on the DHS Birth Defects Register sub-committee
committees (currently under review) and other consultation groups.
If you think that we could contribute to specific government enquiries
or know of opportunities where we can represent your areas of interest,
please let us know. We are also actively looking for more opportunities
to work enthusiastically on collaborative projects such as delivering
education sessions to health professionals and students, and to
assisting with events such as the upcoming information seminar on
the National Disability Insurance Scheme by Yooralla’s CEO
Bruce Bonhady.
Every day, the Genetic Support Network of Victoria staff respond
to the needs of people who are affected by genetic conditions and
rare diseases. We get about 25 requests for information or enquiries
on average, every week. Many of these are calls from people who
need to know more about rare conditions and help and support with
the ‘non-medical’ side of living with genetic conditions:
the human strain. We refer people to support groups and put them
in touch with other individuals with experiences to share. Increasingly
we look to help set up or support a new group. One of the greatest
problems for families affected by genetic conditions is their isolation
and sense of loneliness.
If you let us know, GSNV will help your groups and organisations
to advertise their meetings and conferences in our quarterly newsletters
and on our website.
Our quarterly publications, the GSNV Update and the SG News, also
provide up to date information including news about research and
treatments, government enquiries and reports and news on new and
relevant resources. The GSNV website has a comprehensive listing
of support groups and advocacy agencies, allowing people to contact
groups directly if they choose.
We are very grateful to our supporters, particularly the Department
of Human Services, the Murdoch Children’s Research Institute
and Genetic Health Services Victoria and through the generous donations
from individuals, and membership subscriptions, and grants such
as the Lord Mayor’s Fund, so that the important human and
social support work of GSNV continues and gets better.
In 2010, GSNV will focus especially on building relationships with
support groups and other peak bodies and seek grants and fundraising
to fund the projects that will make the most difference to all of
you.
What will be important in 2010 in terms of support for you, our
community of people affected by genetic conditions and rare diseases?
– Is it the government’s commitment to assess the NDIS
(National Disability Insurance Scheme)? A new national safety net,
ensuring peace of mind of all Australians should they or someone
they love become severely disabled.
– Or is the opportunity to connect with others sharing the
journey more important? Are we meeting your needs for this? How
can we do it better?
– Will it be advocating for the rights, needs and services
that people with genetic conditions simply must have if they are
to live a decent life in the community?
– Or should it be helping groups and committees to speak for
themselves, their particular interest group or for all of those
affected by genetic conditions?
The GSNV Committee is really keen to hear what is important to you
or your support group. We are here to serve you and match our services
with what may be unexpressed demand. So contact the GSNV Office
via email to info@gsnv.org.au or call on (03) 8341 6315, and let
us know what is important to you, and how we can help.
Louisa Di Pietro, President
Moira Rayner, Vice-President
Welcome GSNV Committee Members 2009 – 2010
President - Moira Rayner - Moira Rayner & Associates
Vice President - Jan Hodgson MCRI Education & Research
Treasurer - Catherine McLean - Individual
Secretary- Amanda Springer Public Health Genetics
Secretary - Alice Horwood
Public Officer - Vassie Dandanis- Turner Syndrome Victoria General Committee Members
Maria Listro (on leave) Friends of Sammy Joe Foundation
Ingrid Winship Royal Melbourne Hospital
Jacinta Cannon Pierre Robin Australia
David Francis VCGS Representative
Sarah Ogilvy
Janina Simons Porphyria Society
Christine Williams Porphyria Society
Tony Briffa AIS Support Group Australia
Yvonne Waite Noah’s Ark, Parent of child with PWS
News from the GSNV Office
Have your contact details changed?
It's a new year and we are in the process of updating the contact
details of all support groups listed on our website. Please assist
us by emailing any changes to your groups title, address, phone
no’s, website address, contact person and phone/email, so
that we can make sure people are being referred correctly. Please
email these changes to info@gsnv.org.au.
Stephanie, our Genetic Support Worker will be calling Support Groups
listed on our website to ensure that we have the correct contact
details.
Need help starting a support group?
At GSNV we often receive enquiries from the public regarding how
to start a new support group.
GSNV has compiled some information on setting up a support group
which will be a useful guide.
Included is a link to an organisation called Connect Groups (see
www.connectgroups.org.au) who have an excellent website with more
detailed information on maintaining and growing your group, and
information about setting up on-line support groups.
Please feel free to contact us the GSNV office on (03) 8341 6315
with any questions or queries regarding the information provided,
we will be more than happy to assist you where possible.
GSNV Small Grants Program
Each year, through money raised from memberships, GSNV is pleased
to offer a limited number of small grants of up to $400 to Support
Groups. To be eligible your group must be a current financial GSNV
member.
Please look out for details in our next newsletter; and please ensure
that your membership is current if you wish to apply.
GSNV Membership
Has your membership lapsed? Do you know someone who would like to
receive this newsletter? Membership is open to all members of the
public. Please download the membership form from our website (see
http://www.gsnv.org.au/pages/membership/membership.php) or call
the office and we are more than happy to send out a renewal notice.
Staff Changes There have been a number of staff changes at GSNV. Tarli
Bogtstra has commenced leave, and Stephanie Shepley has brilliantly
stepped into the role of Genetic Support Worker and will continue
to work in this role until early March. We would like to thank Stephanie
for all of her great work for the past few months. GSNV is pleased
to then welcome Jo White to the role of Peer Support and Education
Worker, who we are sure, will fit in beautifully. We look forward
to introducing Jo to you soon.
GSNV is also very excited to announce that very soon we can introduce
you to our new Community Development Team Leader. We just can’t
tell you her name just yet! Stay tuned…
Penny Dodds
Project Administrator
Penny.dodds@gsnv.org.au
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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. Authorised by Leah Lonsdale. Enquiries: Leah Lonsdale
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