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Our team

Making the right connections since 1988

Genetic Alliance Australia is a peak umbrella group for rare genetic conditions/diseases, so rare they do not have their own support group.

Genetic Alliance Staff

Steffani-Jade McDonagh

Executive Director

Steffani has over 18 years experience in the not for profit sector, including over 15 years in senior charity management. This has covered roles in community and disability supports as well as seven years with a Carers Charity in Ireland. Her experience spans several countries including South Africa, Ireland, England and now Australia. Having led or been a senior leader in four other charities she has a wealth of experience in political lobbying, advocacy, training / higher education and business management but most critically of delivering, developing and enhancing services to clients. She also has a decade’s experience in growing charities both through fundraising and grant aid.

On a personal level Steffani is married and has two teenage children (Morgan and Iona). She has firsthand experience of both rare genetic conditions and lifelong disability in her immediate family. In addition to her charity work Steffani enjoys the theatre, acting and travelling.

“I am delighted at the opportunity to work for Genetic Alliance, I have been really impressed by the work done to date and am looking forward to developing the organisation further, and learning more about the challenges faced by those with genetic conditions - though Dianne is going to be a hard act to follow!”

Jenny Rollo OAM

Projects Manager

Jenny has over 30 years’ experience in the disability field as Founder, and presently President, of the Cornelia de Lange Syndrome Association. She is a co-founder and the Australian representative of the International Federation of CdLS Support Groups which was formed in 2001. Locally (with other parents) she has spent the last 11+ years advocating, lobbying State and Federal politicians, planning, and designing a cluster accommodation model for RASAID (Ryde Area Supported Accommodation for Intellectually Disabled). The homes opened in April 2016. All 15 residents settled in quickly and are very happy to be living near their friends, as independently as possible.

“The joy of my life is my grandson, and my passions are travel and photography. I am delighted to be working with families through Genetic Alliance Australia as the Projects Manager. I hope to be able to meet many of you in person at our events this year!”

Dianne Petrie OAM

Long Service Leave

Dianne has a BA majoring in Psychology and an Advanced Certificate in Counselling and has worked in genetic community since 1983. Dianne’s daughter Natasha has Williams syndrome and together with her husband Richard they started the Williams Syndrome Australia support group ( Dianne has successfully expanded Genetic Alliance Australia, achieving national and worldwide recognition. She established Genetic Alliance’s rare diseases contact register representing over 1500 conditions and 3500 people and in 2005 implemented a rural outreach program for carers. Dianne fields over 800 calls a year regarding the diagnosis of a genetic condition and has organised and conducted hundreds of genetic-specific seminars, bringing families and individuals together with professionals in a non-clinical setting. Dianne has been asked to present both here and internationally at many conferences and events. She is a consumer representative on a number of committees - The NSW Newborn Screening Advisory, Human Genetics Advisory Committee, Genetics Network Executive Committee, PGD Assistance Program, Lymphoedema Alliance and Stepping Stones Triple P National Reference Group. Dianne has been involved in research projects with Macquarie and Monash Universities and through advocacy has helped to shape government policy. Dianne was awarded an OAM on the Queen’s Birthday Honour‘s List 2006 in recognition of her work.

Genetic Alliance Board Members

Dr Ann Mulder

Coordinator, Healthy University

Ann is the mother of two adult sons with Pseudohypoparathyroidism. She currently works at Southern Cross University (SCU), Lismore as the coordinator of their Healthy University initiative. She has worked at SCU for around 10 years in health research particularly around stress, mental health and wellbeing. Ann has a B AppSc(Biomedical Science), B Naturopathy, Grad Cert Res Mgt and a PhD (SCU).

Wendy Bruce

Executive Officer of Fragile X Association

Wendy is Executive Officer of Fragile X Association, a member-based not-for-profit organisation supporting individuals with Fragile X-associated conditions and their families. Wendy has worked with community-based support groups for a number of years, and in her early career worked with professional services firms as an information manager.

Wendy has a B Soc Sci (Lib).

Brenda Phillis

Public Relations, Volunteer

Brenda was a member of the Working Party formed in 1987 which established AGSA in 1988, now known as Genetic Alliance Australia. Brenda has been a committee member since then. Brenda has worked in public relations and marketing. She is currently a volunteer at the Wayside Chapel, Kings Cross and loves travelling. Brenda has three daughters, one grandson and one grand-daughter with Ehlers Danlos syndrome.

Dr Jane Fleming

Lecturer & Associate Genetic Counsellor

Jane is a lecturer on the University of Sydney Master of Genetic Counselling course and an associate genetic counsellor. She has an interest in inherited genetic conditions and has previous research experience studying deafness genes and gene therapy for the treatment of a neuro-degenerative condition. Jane’s research interests include personal genome testing, inherited eye conditions, prenatal testing and genetic counselling.

Richard Petrie OAM

President, Williams Syndrome Association

Richard was on the Working Party for The Association of Genetic Support of Australasia (AGSA) and has been on the committee since 1988, much of the time as treasurer. Richard is a Parent Board member of Genetic Alliance Australia. As a parent of a Williams syndrome child, Richard, with his wife Dianne, set up the Williams Syndrome Association in 1985 and has been the association’s President for nearly three decades. Richard worked in the Pharmaceutical industry and was awarded an Order of Australia Medal in June 2009 for meritorious service to the community.

Kate Dunlop

Director, Centre for Genetics Education

Kate is the Director of the Centre for Genetics Education NSW Health. She has worked in education in the health setting for over 25 years and has wide experience in program management, resource development and educating health professionals as well as students, patients and the community generally. Her particular interests include familial cancer, public health genetics including family health history, screening and evaluation, and communication skills training. Kate has a BAppSc(Nurs), DipEd(Adult) and a MPH(USYD), and is a Clinical Lecturer, Sydney Medical School- Northern, University of Sydney.

Carolyn Shalhoub

Genetic Counsellor, Clinical Lecturer

Carolyn has been working as a genetic counsellor for 18 years and is currently the Senior Genetic Counsellor within the Department of Medical Genetics at Sydney Children’s Hospital. Carolyn works in the area of general genetic counselling, counselling people with a range of genetic disorders. She also specialises in the genetics of Cystic Fibrosis, working closely with the Cystic Fibrosis management clinic at SCH. Carolyn’s related area of interest is in the training and supervision of genetic counselling students and junior genetic counsellors. Carolyn is a Clinical Lecturer in the Master of Genetic Counselling course, University of Sydney.

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