our team
In the Office
Leah Lonsdale - Coordinator
Hi! I'm the person you will probably speak to if you ring the GSNV
office. My role includes answering enquiries, linking people to
services that are available to people living with genetic conditions,
organising workshops, putting people in touch with others who live
with the same/similar condition, and general office "stuff".
I believe that everyone is entitled to respect, dignity and self-determination.
It is a privilege to work for the GSNV, which is about empowering
the individual and the family.
Outside of GSNV, I'm learning to play the guitar and love the water.
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 sammyjo2@bigpond.com.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
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