Important news: Limited funding has become available to provide financial assistance to people living with a rare disease or their advocates who are willing to attend the full 3 day symposium. All eligible applications will be considered and assistance offered will be based on supporting the widest possible representation of rare disease stakeholders to attend and participate in this engagement event.
To apply for financial assistance, submit completed application forms to the Local Organising Commitee via fax (08) 9222 6820 or email to genomics@health.wa.gov.au
Conference Speakers (other speakers will be added as they are confirmed)
Tom Exler III
ABC vice president Tom Exler III was born in Pittsburgh with Bladder Exstrophy. He has been a member of ABC since 1994 and vice president since 2006. He is an inventory coordinator in the materials management department at Children’s Hospital of Pittsburgh of UPMC. In the early 1970s, his mother and surgeon founded a support group for parents of children with ostomy and intestinal or urinary diversions. He made his first speech about living with Exstrophy in 1976 at the age of 10. Since then, he has given many speeches and volunteered with organizations, including as a camp counsellor at the United Ostomy Association Youth Rally. He founded the United Ostomy Association Young Adult Network in 2002. He has been active in sports, including playing goalie for the Pittsburgh St. Colm Crusaders Gaelic Football Club in the early 1990s.
William G. Reiner, MD
William G. Reiner, MD, is professor and director of the Psychosexual Development Clinic at the University of Oklahoma Health Sciences Centre (OUHSC) in Oklahoma City and part-time faculty member at the Johns Hopkins Medical Institutions (JHMI) in Baltimore. His main interests are in the issues of longitudinal development in children born with major congenital birth defects of the genito-urinary system, including the Bladder Exstrophy-Epispadias condition, anomalous genitalia, and other disorders. While his clinical and research interests focus on the psychosocial and psychosexual growth and development of these children at all ages and stages in their development into young adulthood, he also studies the long term effects on parents and siblings. He is board-certified in urology, psychiatry, and child and adolescent psychiatry. He is part of a team of investigators that includes Drs. Brad Kropp and John Gearhart.
Misty Blue Foster
Misty Blue Foster was born three months premature at Stanford Hospital in California. She was diagnosed at birth with Cloacal Exstrophy and Spina Bifida. At age 5, Misty was placed in foster care for 14 difficult years after her mother was incarcerated, and later died of complications related to drug addiction. She has had multiple surgeries at the Lucile Packard Children’s Hospital, including failed bladder closures and failed bladder neck repair. She ultimately got the Mitroffanoff procedure with bladder augmentation using intestine at age 10. She had a spinal fusion with Harrington Rod placement at age 16 to correct her scoliosis. She also has an ileostomy. Now 24, she is married, working as an LVN in the Cardiology Department at the Palo Alto Veterans Hospital, and studying for her BSN degree.
Billy Deegan, LMSW, CASAC
Billy Deegan is Executive Director for HEA. He has had a private counselling practice in New York City, focusing on addictions and post-traumatic stress. He became involved in HEA in 2002, working to make educational and supportive information available to adults and families living with genital differences, with the goal of bringing all Disorders of Sexual Development (DSD) advocacy groups together under one large, financially solvent, and politically savvy umbrella group to ensure that DSDs be treated by multidisciplinary teams in centres of excellence.
Joan Hughes, CEO Carers Australia
Joan Hughes was appointed CEO, Carers Australia in 2006. She has been an Honorary Associate in the Department of Nursing Research Centre, University of Sydney until moving to Canberra. Joan is a Churchill Fellow. The researchabout ageing parents of people with disabilities was carried out in Canada, USA and the UK.From 1993 until 2006, Joan was CEO Carers NSW, which has won many state, national and international awards. Carers NSW was funded as the first state peak organisation for carers in 2003. In 2008, she was selected to attend Australia’s 2020 Summit. Joan serves on many Federal Government committees as well as International Carer Advisory committees. She regularly presents at national and international conferences and summits.
Alana Sullivan
Alana Sullivan is president of Bladder Exstrophy, Epispadias, Cloacal Exstrophy, Hypospadias, Australian Community (BEECHAC). Alana is a single parent of four children, including Nicholas, age 15, who was born with classic bladder exstrophy, and has supported him during more than 30 procedures in Australia, and Johns Hopkins in Baltimore. She has gained funding for his surgeries, advocated with his schools for quality facilities and to encourage dignity and respect for him as a person, and has helped set up a charity for his ongoing financial and medical needs.
Professor Wei Cheng, (PhD, Master of Surgery, FACS, FRCS, MBBS) Director of Paediatric Surgery, Southern Health, Victoria
Professor of Paediatric Surgery, Faculty of Medicine, Nursing and Health Sciences, Monash University
Professor Cheng is a paediatric surgeon and a scientist. Clinically, he is interested congenital abnormalities and laparoscopic surgery in children. His lab, situated in the Monash Institute of Medical Research, focuses on the developmental biology and human genetic research of the hindgut development as well as gut regeneration. He actively fosters collaborations across disciplines and across the world. Professor Cheng is conducting research into the genetic origins of bladder extrophy and epispadias syndrome.
Robyn Dagwell
Robyn has worked as a social worker in the disability field for over 20 years with families, young people and children. She has worked in the area of vision impairment and more recently cerebral palsy. In her current position as a Senior Family Support Worker at The Spastic Centre, Robyn provides family support to parents of newly diagnosed children and others facing challenges in the care of children with cerebral palsy. Robyn enjoys working with parents and siblings in mutual aid style groups. She has been running siblings groups at the Spastic Centre for six years and is an active member of the Sydney Siblings Network.
Lydia Lauder Lydia is a Registered Nurse currently working as National Manager, Health Strategic Projects and Publications for Kidney Health Australia, Melbourne. Lydia has worked in the Renal specialty since 1995. In that time, she has worked in several roles within the hospital, industry and non-profit sector, often taking up the challenge of piloting new roles. Her main areas of interest are education, research and health promotion. She is currently a member of the KCAT Sub-Committee for the Education of Nurses in General Practice, the Secretariat for the Home Dialysis Advisory Group and the Secretariat for Renal Indigenous Resource Collaboration.
