our team
In the Office
Leah Lonsdale - Coordinator
Hi! I'm Leah, Coordinator of the GSNV. My role is diverse and includes
working with groups, people and the GSNV team to deliver quality
services for the genetics community.There are many wonderful groups
and organisations that support people. I'm particularly keen to
bring people together to share expertise and work collectively towards
our common goals... that is, overcoming genetic challenges together
and ensuring a rich and meaningful life for everyone affected by
a genetic condition.
I have worked in the community sector since 1997, including seven
years with the Haemophilia Foundation Victoria. Prior to joining
the community sector, I worked briefly in corporate and small business,
including being partner in a small business, and as a primary teacher.
Outisde of GSNV, I like to explore national parks, work in my veggie
garden and spend time with family and friends.
Please feel free to contact me on (03) 8341 6315 or email me at
leah.lonsdale@gsnv.org.au.
Tarli Bogstra - Genetic Support
Officer
Hi All!
My name is Tarli Bogtstra and I am the new Genetic Support Worker.
My role provides first- point-of-call support, referral and advice
to individuals and families affected by genetic conditions, peer
support groups and other interested parties.
I have worked as a Genetic Counsellor for 10 years, in general
genetic clinics, as well as prenatal, paediatric and familial cancer
clinics. I also have experience working with young adults with disabilities
and their families as a case manager, and also as a community educator
at a support group and the MCRI. I hope that my experiences will
assist me in my new role and I am very excited about the contribution
that I will be able to make as part of the great team I have joined.
I am in the office Monday, Wednesday and Fridays, so please feel
free to pop in or give me a call. I look forward to meeting you
all soon. You can call me in the office on (03) 8341 6315 or email
me at tarli.bogtstra@gsnv.org.au.
Penny Dodds - Administrative
Support Officer
Hi, I'm Penny Dodds the newly appointed administrative assistant
for our illustrious leader Leah and the GSNV team. I am in the GSNV
office Monday, Tuesdays and alternate Wednesdays, and I may
be the one answering the phone on those days. I am delighted
to be on board and look forward to meeting all involved with the
GSNV, and assisting 'behind the scenes'.
I am passionate about community support and inclusion for all
people, and thrilled to be working for the GSNV.
Along with my husband Matthew, I am part of our local council's
Disability Advisory Group, representing parents of children with
disabilities, and we are also involved with the DHS Priority of
Access Panel. In my spare time I love hanging out with my gorgeous
6 year old boy Levi, I also enjoy reading, cooking and sleeping....
You can find me in the office on (03) 8341 6315 or email me at
penny.dodds@gsnv.org.au.
President
Louisa Di Pietro
Thalassaemia
Australia (formerly Thalassaemia Society of Victoria)
As the incumbent Community Educator and Community Development Program
Coordinator for the Thalassaemia Australia it is with pleasure that
I take on the role of Vice President of the GSNV. My tenure
as a general committee member over the last 12 months has been an
excellent opportunity to not only contribute to the important
work of the GSNV in Victoria, but to engage with a fantastic group
of capable, dedicated and indeed hard working peers.
I very much look forward to continuous improvement and a productive
year ahead with a new Executive and Committee. I am personally
rewarded in offering the haemoglobinopathy perspective on genetic
health and relish any opportunity to make advancements in genetic
support advocacy and representation in this state. We have
renewed vigor and momentum in improving funding, programming and
working conditions for the GSNV and it is with a fantastic team
in 2009 that we will work to this end.
You can contact Louisa at info@tsv.org.au
Vice President
Moira Rayner
Individual Member
Moira Rayner is a senior and experienced lawyer, particularly in
the high-risk area of managing workplace behaviours. Until June
2005 she was Deputy Managing Director of a national employer organisation
and managed its Melbourne office. She teaches in the postgraduate
discrimination law course as a Senior Fellow at Melbourne University's
Law School. Her postgraduate qualifications in public policy have
been put to good use in several statutory offices.
Moira Rayner is best known in Victoria as its last Commissioner
for Equal Opportunity. She has also been the Acting Deputy Director
(Research) of the Australian Institute of Family Studies; a Hearings
Commissioner of the Human Rights and Equal Opportunity Commission,
and a full-time consultant in the national law firm Dunhill Madden
Butler (now Deacons) for more than six years, when she helped establish
the firm's Discrimination Law Practice, and worked with major employers,
universities and government departments. In 2000 she became the
first Director of the Office of Children's Rights Commissioner for
London, which modeled effective children's participation in government
and is now an integral part of the Greater London Authority, London's
new regional government. She has co-authored several books on governance,
human rights, government policy and women and power.
You can contact Moira at people@moirarayner.com.au
Treasurer
Catherine McLean
I worked in the GSNV office for just over a year, before leaving
in April 2007 to return to my volunteer role as Committee Member,
Webmistress, and occasional organiser of Family Days. I work very-nearly-full-time
as an admin officer at a medical research institute, where I get
to view healthcare provision from a very different perspective!
I'm very excited to be involved with the GSNV. This is a real community
organisation which links people to services, information, and other
people, and I feel fortunate to be a part of it.
When I'm not working or volunteering, I spend a lot of time cooking
up feasts, singing in a choir, cross-stitching for Quilts
For Kids, organising Shakespeare readings, making very silly
birthday cakes, and writing even sillier novels. I am rarely bored...
You can email Catherine at catherine@gsnv.org.au.
Joint Secretaries
I have been involved in the Victorian Turners Syndrome Association
(VTSA) since I can remember in some shape or form. I am currently
a general committee member on VTSA but have previously been a co-editor
for the newsletter with my mother.
Since I was in year 8 at school I have been involved in ChIPS (Chronic
Illness Peer Support) at the Centre For Adolescent Health and have
been on the Reference Group (committee) for the past two years.
This has involved compiling the newsletter and magazine and being
a 'consumer representative' when it comes to being a young person
with a chronic health condition.
I'm currently finishing my Degree in Arts - Community Development
(Australian Stream) at Victoria because I have a strong passion
for community development and advocacy.
In my leisure time I'm found catching up with friends from groups
including ChIPS, RYLA, and Youth Lead, walking or catching a fit
ball class.
I can be contacted at vassiliki.dandanis@live.vu.edu.au
General Committee Members
Erica Brown
Genetic
Health Services Victoria
Profile coming soon.
Susan Currie
Pophyria
Association Australia
Profile coming soon.
Amy Herlihy
Public Health Genetics, MCRI
Hello. My name is Amy and I am very much looking forward
to becoming involved with GSNV. In 2006 I finished the first part
of my training as a Genetic Counsellor after working for a number
of years in men’s health and genetics. During this time I
was lucky enough to work overseas in Japan, Denmark and the USA,
and have met many great and interesting people through my travels.
In 2007 I started my PhD within the Public Health
Genetics department at The Murdoch Children’s Research Institute,
and am also supported by Andrology Australia, the national organisation
for men’s health. My project is looking at the risks and benefits
that could arise from screening for Klinefelter’s syndrome,
but my wider interests include the ethics, behavioural genetics,
and genetics education. I too like to keep busy with lots of music
stuff, hanging out with family and friends, sewing, knitting, taking
photos and going to the beach whenever I can!
You can email Amy at amy.herlihy@mcri.edu.au
.
Maria Liistro
Trichothiodystrophy
Support Network
My name is Maria, and I founded the Trichothiodystrophy (TTD) Support
Network in 2002, after my son, Sammy-Joe, was diagnosed with TTD
at the age of 13. He's basically allergic to sunlight. I have endlessly
raised awareness and continue to do so, and now have 17 other children
in Australia with TTD and also am trying to encourage families that
have Cockayne syndrome and XP to join our group. This year, we launched
the opening of the "Friends of Sammy-Joe Foundation" which
is now an official DGR and Charitable Trust. The Fund is to help
Children and young people that suffer with Trichothiodystrophy,
Cockayne Syndrome and Xeroderma Pigmentosum, it was something that
I had envisaged 3 years ago and worked hard at getting it off the
ground.
I am humbled to be a part of your committee, I feel very grateful
that you all have allowed me to be a part of your team, I know I
can learn a lot from you very inspirational people. (And after
reading all of this, I think we can learn a lot from you, too! –
CM.)
You can contact Maria at maria@gsnv.org.au
Carly Myer
Short Statured People
of Australia
Profile coming soon.
Jane Tombs
Spinocerebellar
Ataxia Australia
Profile coming soon.
Andrew Williams
OzED - Australian
Ectodermal Dysplasia Support Group
I am the Founder and President of ozED – Australian Ectodermal
Dysplasia Support Group Inc. I have been involved with the
GSNV since 2004. I have been involved with the GSNV on the
committee, as the pseudo secretary, as a presenter at a number of
workshops (which I hope to expand in 2009) and attended a number
of events (including umpiring the snakes and ladders game at one
of our family days).
I am married and have three children. All three children
have Ectodermal Dysplasia. I am also on school council at
my children’s school and the centre coordinator of my local
Auskick centre. I believe strongly in the philosophy of “you
get out of something, what you put in.”
GSNV is soon to celebrate its tenth birthday. This organisation
has grown and is developing at an astounding rate. The organisation
has been steered by some fantastic people, of whom I will not mention
names, as I am sure I would miss out a lot of people. Taking
on the role of President will no doubt be a challenge, but with
the fantastic staff and committee that run the GSNV, the committed
support from organisations such as the GHSV, MCRI and Health professionals
and finally our individual and support group members who have a
passion and enthusiasm that is quite contagious, I am looking forward
with pride to serve the GSNV.
You can contact Andrew at andrew.gsnv@ozed.org.au
|
_01.gif)
_02.gif)
_03.gif)
_04.gif){kind=small}
_05.gif)
_07.gif){kind=small}
_09.gif){kind=small}
