The Committee includes the officer bearers listed in the table on our contact page (President, Vice President, Treasurer and Secretary), each state and territory coordinator, and the mentor coordinator.Committee members were first chosen at our inaugural meeting in May 2008 by the founding BEECHAC Inc members.It is proposed that elections be held at the Annual General Meeting in June 2009 and thereafter at each national conference, and that all members will be able to vote in person or online. The Committee meets at least four times a year with one meeting being at the same time as the Annual General Meeting.
Alana is the mother of Nicholas, born in 1993, with classic Bladder Exstrophy. She is the mother of four children. Alana was fortunate to be able to communicate with a number of families who had children with Bladder Exstrophy when Nicholas was young. This support, both medical and emotional assisted her in helping her son as he grew. Alana was interested in developing a network of families in the 1990s BEST- (Bladder Exstrophy Support Team) and believes that families and people with these conditions working together, sharing tips and being there for each other is vital in dealing with these conditions. She believes that unity is knowledge and strength. Alana is a busy single mother, being aware of family issues, parents, and siblings. She currently teaches part time at a Sydney primary school.Alana and Nicholas have travelled to USA twice for treatment for Nicholas, as well as having treatment in Sydney and Melbourne. She also is interested in understanding the reasons for this anomaly and in working together with medical professionals, psychologists and educational institutions to maximise support for these children and develop awareness.
Raylene Gass — Victorian Coordinator Raylene was instrumental in establishing The WEE KIDS FOUNDATION, which is based in Victoria. The foundation was established to provide a support network for children and families who are dealing with kidney and urinary tract medical conditions. Raylene has seen the need for a support network after feeling very alone once her daughter was born. The Wee Kids Foundation has found there are huge benefits to children in knowing others like themselves. Raylene has worked in the Wee Kids administration over the last 18 years.
Julie Fitzhardinge — Treasurer
Julie has a 28 year old son with Hypospadias, who underwent many operations in his childhood.Julie is trained as a Horticulture teacher and has been working as the Outreach Coordinator at Meadowbank TAFE College since 2003. Julie has had experience as the Treasurer of the Horticultural Therapy Society of NSW Inc from 2004 till 2007, President of Riverside Girls High School Parents and Citizens Association from 1998 till 2001, President of the First Ryde Scouts from 1989 till 1991 and Coordinator of the Telopia Centre for Disabilities at Ryde TAFE College from 1997 till 2003.
Christine Sylva — Secretary
For many years Christine has been concerned about the lack of resources for people with the rare disabilities related to Bladder Exstrophy. Chris had a son, Tom, who died in 2007 at the age of 28 years.Tom had Epispadias and underwent more than 35 operations including one in the USA. In the last few years of his life, Tom had several hospitalisations for kidney infections. Christine originally graduated as a General Nurse from Royal Prince Alfred Hospital in Sydney in 1971. She then graduated from a Bachelor of Arts in Communication in 1987 from the University of Technology (UTS), Sydney and a Graduate Diploma in Adult Community Education in 1989 also from UTS.Chris has worked as a Community Nurse and as a Nurse practitioner at the Family Planning Association in Sydney. For the last 20 years from 1987 till last year Chris worked for TAFE NSW as a Senior Education Officer in the Equity Directorate. Christine hopes to undertake further study this year in a Masters in Public Health.Christine was a founding member of ACEA Inc (Australasian Corrections Education Association) for educators involved with education for prisoners and juvenile justice detainees. She was also Secretary and then Treasurer for ACEA from 2002 till 2006.
State and Territory Coordinators
Angie Boden — Queensland Coordinator
Angie is the mother of three children and her youngest child, Elijah, was born in 2005 with Bladder Exstrophy. Angie was born in Northern Ireland, lived in South Africa until her late teens, then returned to Northern Ireland to complete her secondary education. Her work with and for people with disabilities throughout her adult life spans two continents over 18 years and has involved a diverse range of roles from community visitor to manager of not for profit community organisations. The birth of Angie’s son with Bladder Exstrophy was the catalyst for her to undertake biomedical studies at the University of Southern Queensland. Angie is excited about the establishment of BEECHAC as a place where individuals and families can access support and up-to-date information regarding treatment and resources.
Melani Clemmans —Western Australian Coordinator
Melani has a son, Joshua (DOB 13/10/02), with Bladder Exstrophy (he has had 7 operations to date and is awaiting one for a BNR which she is hoping will be done in the next couple of months). She immigrated from South Africa with her husband Konrad, and 2 other children (Jamie & Jessie) in 2005. She currently lives in Perth and starts a new adventure in home educating all 3 of her children along with the help of one very enthusiastic husband! Melani has a background in Advertising where she worked as Packaging Manager for 10 years. She has a degree in Business Administration and Marketing. On the side just to make life more than hectic, she runs a Bed & Breakfast and Photographic Studio.
Imogen Yang — NSW Coordinator
Imogen is on the sub-committee for media and communications. Her relationship with Tom Sylva, who had Epispadias, gave Imogen an intimate perspective on the complex issues that a person with this type of condition copes with throughout life. Imogen is a freelance curator, arts writer, administrator, and independent advocate in the arts, disability and cultural.Her interests include intercultural exchange, arts and the law and access to arts, culture and media for people with a disability. Imogen’s community participation includes developing creative projects with the Art Gallery of NSW, the Museum of Contemporary Art Sydney, the Powerhouse Museum and the Sydney Writers’ Festival; Advisory Group for the City of Sydney Chinese New Year Festival, Advisory Council of the Asian Australian Artists Association Incorporated (Gallery 4a), Founding member of the Australian Bookbinders Inc, Founding member of the Western Sydney Conservation Alliance, Founding director of the Insightful Arts Access Project, former Acting Director of the Asia Australia Arts Centre (Gallery 4a). Imogen’s. experience includes a range of professional and voluntary roles in media, public relations, advertising and project development for commercial organisations, community groups and non-profit agencies such as Vision Australia.
Carol Sylva — Northern Territory Coordinator
Carol was the cousin of Tom Sylva who had Epispadias. Carol graduated as a General Nurse at St Vincent’s Hospital, Sydney in 1964 and then graduated as a Psychiatric Nurse in Edinburgh, Scotland in 1971. Carol has a 32 year old daughter who is a paramedic and a 38 year old foster son. She has worked in children’s hospitals in Australia and in Britain and for the last ten years until recently worked as a nursing sister at the Mental Health Unit at Taree Hospital, NSW. Carol now works voluntarily for a Refugee Support Group in Darwin.
South Australian Coordinator — TBA
Tasmanian Coordinator — TBA
ACT Coordinator —TBA
Craig Stack — Mentor Coordinator
Craig Stack is twenty two years old and has had approximately 90 operations for Bladder Exstrophy.Craig worked hard to make up the academic time that he felt he had lost due to his many hospitalisations and he recently graduated as a paramedic from Charles Sturt University at the end of 2008. He will be taking a position as a paramedic based at Mildura Hospital in March 2009. Although Craig has been through so much himself with his Bladder Exstrophy, he is well suited to be a mentor and very keen to help others with similar conditions and their family and friends.
Advisory Committee
The Advisory Committee was set up to provide BEECHAC Inc with strategic advice and relating to a number of key areas. These include governance, accountability, legal, research, reporting requirements, referrals. The Committee will meet twice yearly and also offer the Management Committee individual advice when required on various issues related to the running of the association.
Lindy Cassidy
Lindy is a Principle Education Officer with TAFE NSW, and has extensive experience in working with disadvantaged students. Lindy completed a Bachelor of Arts in 1978 from Victoria University in Wellington, New Zealand, a Graduate Diploma in Education in 1981 from the Auckland Teachers College and a Masters in Interdisciplinary Studies from the University of New South Wales. Since her arrival in Australia at the end of 1981, Lindy has worked in social justice areas first as a Senior Education Officer with the Department of Corrective Services, then with the Commonwealth Government’s Affirmative Action Agency and more recently with TAFE NSW in the Equity Directorate. Lindy’s commitment to social justice and her experience in the vocational education and training sector will be useful assets on the advisory Committee. Lindy is also on the Board for Guthrie House which provides accommodation and support for women leaving custody.
Tony Trimingham
Tony Trimingham started Family Drug Support for families suffering the effects of illicit drugs after a public meeting about the death of his son Damien from a heroin overdose. As a counsellor and group leader for 30 years, Tony has assisted many families suffering with family members who use illicit drugs. The Foundation runs a 24-hour help line manned by volunteers who have been directly affected and support meetings in Sydney.They have produced a parent Education Kit for families. In 1998, the Prime Minister appointed Tony a founding member of the Australian National Council on Drugs and was awarded an Australian Day Medallion in 1999 by the Alcohol and Other Drugs Council of Australia for outstanding achievement in the reduction of alcohol and drug related harm.Tony Trimingham’s awards include: Compaq Computer Community Star, 1999, for his selfless dedication to community work; Outstanding Individual Contribution to the Field of Alcohol and Drug Education by the Australian Drug Foundation , 2001; The National Rolleston Award, 2004, for outstanding work in supporting families; Order of Australia, 2005; Humanitarian Society Award for Social Justice, 2005; 2008 Prime Ministers award for Excellence and Outstanding Commitment to Drug and Alcohol Endeavours.Family Drug Support won an award for an Organisational Excellence from The Ted Noffs Foundation, 2002.
Dr Natasha Nassar
Dr Nassar is a peri-natal epidemiologist and NHMRC Postdoctoral Research Fellow based at the Peri-natal Research Group of the Kolling Institute of Medical Research at the University of Sydney, and Honorary Research Fellow and adjunct Senior Lecturer at the Centre for Child Health Research, University of Western Australia (WA). She has extensive experience in pregnancy-related research investigating maternal, pregnancy and socio-demographic risk factors and their impact on maternal and child health outcomes and health service utilisation.
Dr Nassar has recently returned to NSW after working for three years as a Research Fellow at the Telethon Institute for Child Health Research (TICHR) in Western Australia with Prof’s Fiona Stanley and Carol Bower, both leading peri natal epidemiologists and birth defects researchers. She also worked as a Locum Research Fellow at the Western Australian Birth Defects Registry. The focus of Dr Nasser’s recent research includes a body of work investigating the epidemiology of Hypospadias in WA; including the study of the prevalence, trends, maternal and paternal reproductive health risk factors of Hypospadias, and the impact on health care services and clinical practice with the assessment of the rate of hospitalisations, surgical technique and health outcomes following surgical repair. She is collaborating with various researchers on these projects, including paediatric surgeons/ urologists, environmental epidemiologists at the University of WA, clinicians at the Harvard Children’s Hospital, Boston and geneticists from TICHR; and has recently received pilot funding to investigate the genetics and epigenetics of Hypospadias and other male urogenital birth defects.
Jennifer Ann Rollo
Jenny founded the Cornelia De Lange Syndrome (CdLS) Association in 1986.In this time the group has become an incorporated body (Cornelia de Lange Syndrome Association (Australasia) Inc) and been awarded gift recipient status by the Australian Taxation Office. Jenny works as a Senior Technical Officer in microbiology. Her 25 year old son has CdLS. Jenny brings to the committee expertise in setting up a similar association. She has a wealth of experience in organising national and international CdLS conferences, setting up the CdLS clinics, coordinating AGMs and committee meetings,training coordinators, running workshopsfor mums, grandparents and professionals at national and international conferences, speaking at conferences about various subjects related to caring for people with disabilities, lectured students of occupational therapy at university and student nurses about disability issues, and organised many fundraising activities.
Jenny was awarded the Medal of the Order of Australia for community service and in particular for service to the CdLS Association, in 2002.She was a founding member of the Ryde Area Supported Accommodation for Intellectually Disabled Inc. begun in 2004, serving as Vice President. This group also has been incorporated and been awarded tax deductible gift recipient status. She also works as a lobbyist for services for the disabled, in particular NSW Developmental Disability Health Unit, dental services, health services and supported accommodation for intellectually disabled people.Jenny also has experience in fundraising, managing an advisory group, lobbying and staff training for the Crowle Foundation.
Professor Kathryn Refshauge
Professor Kathryn Refshauge has been the Chair of Physiotherapy since 2005 and Associate Dean, Research and Innovation since 2006 at the Faculty of Health Sciences, the University of Sydney.Kathryn also has been teaching undergraduate and postgraduate students in Physiotherapy since 1985. Kathryn has the personal experience of being the aunt of Tom Sylva who had Epispadias.
Kathryn has a wealth of experience in the preparation of grant applications acquiring over $5million in grants over the years for Sydney University.Kathryn has also reviewed grant applications for many funding bodies (NHMRC, ARC, PRF, Arthritis Foundation Australia, and Neurology Foundation NZ) and reviewed manuscripts for medical journals. Kathryn has published more than 130 journal articles, 3 books and written approximately 18 book chapters and co-authored national and international guidelines for best practice treatment of various conditions, been a keynote and invited speaker at numerous national and international conferences and chaired a variety of health related working parties. Kathryn was a Committee member of the University of Sydney Human Research Ethics Committee (2000-2003) and is currently on the Human Research Ethics Committee for the Cancer Institute NSW, on the editorial board of the Journal of Orthopaedic and Sports Physical Therapy (USA) and the Physiotherapy Research International (UK) and on the board of Sports Medicine Australia.She was a former Executive of the Australian Physiotherapy Association and a Senior Honorary Research Associate at Prince of Wales Medical Research Institute and at St Vincent’s Clinic.
Jen Small
Jen Small graduated as a Registered nurse in 1975 (St Vincent’s Sydney),specialising in Neurosurgicalnursing and gaining a diploma in Neuro Medical/ Surgicalnursing from Queens’s Neurological Hospital London in 1977.Jen worked extensively with Para and Quad patients and their families until 1982. In 1983 Jen was employed by the Sacred Heart hospice Darlinghurst to plan and implement the first 24 hour Palliative Home care programme in Sydney. After completing her clinical counselling course Jen established the Sacred Heart Bereavement Service in 1990 which offers grief and trauma counselling services to the community of the South Sydney Eastern Area Health Service.Jen is currently working in grief and trauma counselling at RPA and Concord Hospitals and has recently commenced working also as a School counsellor at St Scholastica’s College Glebe, where she is working with marginalised indigenous students from Sydney and western NSW as well as students
Murray Tavener
Murray Tavener currently is a solicitor for Maurice Blackburn Lawyers, Queensland.He graduated from The University of Newcastle in 2003, with a Bachelor of Biomedical Science and a Bachelor of Laws.Murray has worked exclusively in medical litigation on behalf of injured persons experiencing a varied rang of traumatic life events.
Sub-committees will meet regularly throughout the year when required and report progress to each general meeting.Sub committees will be formed from time to time, e.g. for organising conferences and forums, setting up the mentoring system, etc.
The agenda and minutes of sub committee meetings will be posted on the website under each sub-committee heading.
Any member with an interest in a particular area can join a sub-committee.If distance is an issue, members can be teleconferenced into meetings or talk separately with the sub-committee coordinator to share their ideas and opinions.
The dates, times and venues for each sub-committee meeting will be decided amongst the members.It is expected that the sub-committees will meet on a needs basis, and need to be held one or two weeks before the General Committee meetings, so reports from the sub-committee can be prepared for presentation.
Topics for sub-committee work
Research and public awareness
·searching websites and newsletters for relevant research papers to add to our research webpage
·preparing submissions for funding/grants for research
·investigating government department statistics and university research about numbers, geographic patterns, types of disabilities, new techniques in surgery etc
·developing public awareness about the disorders covered by BEECHAC through the media, with health professionals, family and friends
Communication and media
·developing and maintaining the quarterly newsletter, pamphlets and fact sheets for family, friends, schools, hospital staff, health professionals
·lobbying relevant doctors, politicians and government departments regarding the specific needs of our members
·maintaining/updating our website and email —improving user friendliness, adding new innovative mechanisms and teaching relevant members how to effectively use and update the website.
Support
·developing financial and psychological support mechanisms for members
·supporting members to set up groups in each state
·preparing submissions to fund travel, accommodation, equipment and expenses to enable families to attend appointments and operations with doctors
·providing referral information for psychological issues for any member
Fundraising and fun activities
·arranging activities in each state to raise funds
·submitting proposals for funding events
·arranging social events to enable members to meet each other in a fun and relaxed environment, e.g. dinners, trivia nights, bowls, camps, auctions
