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.
Penny Dodds - Administrative Assistant
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
Carly Myer
Short Statured People
of Australia
Profile coming soon.
Vice President
Marjorie Cresp
Porphyria Association, Victoria
Profile coming soon.
Treasurer
Amy Herlihy
Public Health Genetics, MCRI
Hello. My name is Amy and I am very much looking forward to becoming involved with GSNV as the new Treasurer, although we all hope Sharon will continue to play an active part in the organisation! 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 .
Secretary
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.
General Committee Members
Tony Briffa
Androgen Insensitivity Syndrome Support Group Australia
I have been involved with many advocacy, support and human rights groups in the last 18 years and enjoy making a difference. I particularly enjoy empowering people to stand up for themselves and take on a more active role in the management of their lives - whether that be in managing their genetic condition or local environment.
I have been a foster parent since 1997 and have two children. I currently work for the Commonwealth and am studying part-time.
Despite being originally diagnosed at the Royal Children’s Hospital in Melbourne as having Androgen Insensitivity Syndrome (AIS), I’ve recently discovered my real genetic condition is 5 Alpha Reductase Deficiency (5AR). Having 5AR has made my life challenging at times - especially because it was misdiagnosed and mismanaged in the past - but I have not allowed it to prevent me from living a fulfilling life. In fact, having 5AR has enriched my life in many ways.
Educating society about genetic conditions and the issues faced by those living with them is highly important to me. I am also concerned about the use and potential misuse of genetic information, particularly when that information is misunderstood and results in the termination of a foetus just because they have a genetic variation. Language is also important. I do not consider anyone with a genetic variation to be 'defective' or 'abnormal'.
My other interests include spending time with my family, playing woodwind instruments, collecting antiques and escaping to the country for a break.
I look forward to ensuring the GSNV continues to provide valued information, education, support and advocacy services to peer support groups, families, affected individuals, medical professionals and government agencies.
You can email Tony on abriffa@iprimus.com.au
Vassie Dandanis
Victorian Turner's Syndrome Association
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 Diploma of Community Welfare at Holmesglen TAFE Moorabbin and would like to continue with studies at Victoria University St Albans (Bachelor of Arts, Community Development, Australian Stream) in 2008. This is 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 or grooving at Ashburton Aqua aerobics classes.
Vassie can be contacted at vassiliki.dandanis@students.vu.edu.au
Louisa Di Pietro
Thalassaemia Society of Victoria
Hello everyone my name is Louisa Di Pietro and I am the incumbent Community Educator for the Thalassaemia Society of Victoria Inc., (TSV). I am most pleased to join the GSNV team and to become actively involved in an organisation that promotes and fosters genetics awareness, advocacy, education, and support networking. So many individuals and groups in our community can benefit from the outreach of GSNV. With only one committee meeting under my belt I am confident that I can learn and glean pearls of wisdom from my peers and perhaps impart some of my knowledge too. I look forward to working towards greater outcomes for GSNV into 2008. Let it be said that the snacks at meetings are great too!
It’s been a steep learning curve for me this year as I am very new to my role and have now for the first time begun to work professionally with Thalassaemia. I do however understand implicitly the complexities of life with a genetic disorder and seek to continue my commitment to promote and highlight the positive and inspirational elements of life with complex health issues.
Thank you to GSNV for the opportunity to become a committee member.
You can contact Louisa at info@tsv.org.au
Susan Fawcett
Genetic Health Services Victoria
I have been a genetic counsellor for 9 years working in a number
of areas including prenatal, paediatric and cancer genetics. This
has enabled me to develop an understanding and appreciation of the
complex issues raised by the diagnosis of a genetic condition, medically
and psychosocially, for individuals, their families, and their health
professionals.
I come into this position of GHSV rep to the committee with big
shoes to fill, taking over from Margaret Sahhar who is known to
many of the families in the GSNV. I hope that I can continue on
in the same spirit as she and that we can build on the close working
relationship between GSNV and GHSV.
Sarah Gliddon
Cystic
Fibrosis Victoria
Profile coming soon.
Sharon Lewis
Public Health Genetics, MCRI
I was the treasurer of the GSNV for 3 years between 2004 and 2007 which I thoroughly enjoyed. I have recently stepped aside as treasurer to have a baby but will remain as a committee member. I currently work in research at the Public Health Genetics group at the Murdoch Childrens Research Institute where my main interests include the use of specialist clinical services during pregnancy, tests available during pregnancy, and investigating the causes of different birth defects. My background is in molecular genetics, genetic counselling and epidemiology. I was born in Wales and came here on holiday, with my then boyfriend, in 1999. The weather here was too good and my then boyfriend is now my husband and we have both become Australian Citizens.
I love to travel, go to the gym and enjoy meeting new people from all walks of life.
You can email Sharon at sharon.lewis@mcri.edu.au
Maria Liistro (Apprentice Committee Member)
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
Carolyn Minster
Down Syndrome Association
Victoria
I have been a member of the committee of management of the DSAV for 2 years and am hopeful that my representation on the GSNV committee will result in some productive collaboration between the 2 organisations.
Personally, I am a great believer in seeing people for who they are rather than what they have. I think that most people with disabilities are capable of far more than the general population would believe of them.
I am a chiropractor by profession but the majority of my time is taken up with my other job as mother of 4 children (12, 10, 7 and 5). My daughter Perri has Down syndrome.
I look forward to learning more about the GSNV and, hopefully, contributing to its wonderful work in the future.
You can contact Carolyn at ChiroLife@optusnet.com.au
Penelope Myers
Glenroy FMS Self Help Group Organisation
Profile coming soon.
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
Andrew Williams
OzED - Australian Ectodermal Dysplasia Support Group
Profile coming soon.
Ingrid Winship
Inaugural Chair of Adult Clinical Genetics, Royal Melbourne Hospital
Professor Ingrid Winship is the inaugural chair of adult clinical genetics in the Department of Medicine and Royal Melbourne Hospital, at the University of Melbourne. She is head of the adult genetic service at the Royal Melbourne Hospital. Ingrid is a clinical geneticist with a special interest in inherited skin disorders, cardiac genetics, adult onset genetic disorders and the inherited predisposition to cancer. She is also the Executive Director of Research for Melbourne Health.
She is chair of the Cancer Council of Victoria's Victorian Co-operative Oncology Group Cancer Genetics Advisory Group and a member of the newly formed Victorian Cancer Agency Consultative Council. She is a trustee of DEBRA New Zealand.
You can contact Ingrid through the Genetics Clinic on (03) 9342 7151.
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