FXAA Board of Directors and Scientific, Clinical & Research Committee
Fragile X Association of Australia (FXAA) is an Association incorporated in NSW governed by a Board of volunteer directors elected by the members.
BOARD OF DIRECTORS
Prof Wm Ted Brown (President)
Professor Wm. Ted Brown is the recently retired Director of the New York State Institute for Basic Research (IBR) in Developmental Disabilities, Staten Island, NY. Born in Montana, USA, he received his PhD from Johns Hopkins and his MD from Harvard. Upon retiring, he moved to Sydney and married pediatrician Dr Jacqueline Small, who runs a clinic for children with DD. He has an appointment as Visiting Professor at the University of Sydney. He is a fellow of the American Board of Internal Medicine and the American College of Medical Genetics. Much of his 35 year research career has focused on the Fragile X syndrome and on autism. He was the first to describe a relationship between autism and the Fragile X syndrome. His team was the first to demonstrate the feasibility of prenatal diagnosis for Fragile X, and subsequently have provided prenatal diagnosis for more than 1,400 known carriers. His laboratory has developed a sensitive antibody test to quantify the fragile X protein levels in blood spots. His clinic was a participant in the Fragile X drug trials sponsored by Seaside, Novartis and Roche. He was the principal investigator on a CDC sponsored study of the natural history of Fragile X that included 26 clinics in the US. Prof Brown was re-appointed to the Board at the AGM on 11 November 2018.
Judith Lenart (Treasurer)
Judith is an experienced director with a background in business, education and health. She has served on the boards of several companies and charities in Australasia. Judith is a registered valuer and has served on the finance committee of CatholicCare Broken Bay, New South Wales. Judith was re-appointed to the Board at the AGM on 11 November 2018.
Christine Kelleher (Secretary)
Christine has been involved with Fragile X Association for nearly twenty years, including serving on the board and the executive committee several times. She is a mother of three adult children, two of whom have full mutation Fragile X. Christine is passionate about seeing Fragile X Association succeed and sharing her knowledge of raising affected children within the Fragile X community. Christine is based in Sydney. Christine was re-appointed to the Board at the AGM on 11 November 2018.
Graham’s son James is an adult with Fragile X syndrome. Graham re-joined the Board in May 2016, having previously served as a director, Vice-President and President of the Association. Graham has also served on the board of Duke of Edinburgh Awards, and Life Be In It (NT). He is a current member of the Australian Institute of Company Directors. Graham spent the majority of his career in the Air Force and now serves as a business manager within the Department of Defence. Graham also volunteers with Special Olympics Queensland as a basketball coach for one of the Brisbane teams. In his spare time he enjoys gardening, cultural events, catching up with friends or just being with his wife Amanda. He is an amateur artist who enjoys doing landscapes and portraits in oils. Graham is based in Brisbane. Graham was re-appointed to the Board at the AGM on 11 November 2018.
Katherine is English and moved to Australia in 2006 with her husband David. Together they have two children. Samantha is 9 and has not been tested for Fragile X. Andrew is 7 and has Fragile X syndrome. Katherine is a carrier of the Fragile X premutation. Katherine has worked in the finance industry for over 10 years. Before moving to Australia she was supervising a debt recovery team for a stock broker, representing the company in court during disputed claims. Katherine built on her public speaking experience as a weight loss meeting leader for a year in 2012/13 before returning to the finance industry in a sales role. Katherine has recently taken up running and likes to run for fitness with friends. Katherine has taken part in several organised running events and has used these events to fundraise for FXAA on several occasions. Katherine is based in Adelaide. Katherine was re-appointed to the Board at the AGM on 11 November 2018.
Wayne lives in Busselton, Western Australia with his wife Lisa, their daughter Emma (9) and twin boys Ben & Zak (6). Zak has Fragile X syndrome whilst his siblings are unaffected. Wayne has held several senior positions in the public sector in analytics and investigations, and in enforcement and compliance operations. He currently holds an operational leadership position within the mining industry. Wayne enjoys spending time fishing and camping with his family. Wayne was appointed to the Board on 11 November 2018.
Kate is a disability advocate and mother of two children who have Fragile X full mutation. She is based in Melbourne and is a director of a consulting organisation that specialises in supporting and empowering participants in the National Disability Insurance Scheme. She has represented families of children with disabilities on a number of consumer and advocacy bodies, and has presented at a wide range of forums on inclusion of people with disabilities, disability supports and NDIS. Originally an environmental engineer, Kate has experience working in board and management roles in the not-for-profit, government and consulting sectors. Kate loves yoga and the Australian bush, and is attempting to establish a sensory garden at home with the help of her children and husband Stuart. Kate was appointed to the Board at the AGM on 11 November 2018.
Mike is originally from the UK and is married to Helen who is from Sydney. They have two children, Josiah aged 7 and Hannah aged 10. Josiah has Fragile X syndrome while Hannah is not medically affected. However, she does point out that she is still indirectly affected as a sibling of a brother with Fragile X! Mike has worked in the technology and social impact sectors for 20 years. He is the founder of Xceptional, a technology services firm that employs people with autism and was featured on the ABC’s ‘Employable Me’ series. Mike holds a masters from Harvard and a BA from Oxford. Mike is also a runner and has recently broken the world record for the fastest half marathon in a business suit! He took on the record to raise funds and awareness for Fragile X in Australia and internationally. Mike lives in Sydney. Mike was r e-appointed to the Board in December 2018.
SCIENTIFIC, CLINICAL AND RESEARCH SUB-COMMITTEE
The Scientific, Clinical & Research Committee of FXAA comprises a number of researchers and medical professionals with a demonstrated interest in Fragile X-associated disorders, including Fragile X syndrome, Fragile X-associated Tremor Ataxia syndrome (FXTAS), and Fragile X-associated Primary Ovarian Insufficiency (FXPOI). The Committee meets quarterly by video conference.
Prof David Amor Victorian Clinical Genetics Services, Royal Children’s Hospital, Melbourne
Dr Alison Archibald Murdoch Childrens Research Institute, Royal Children’s Hospital, Melbourne
Prof Ted Brown President, Fragile X Association of Australia
Dr Jonathan Cohen Medical Director, Fragile X Alliance Clinic, Melbourne; Director Genetic Clinics Australia; Adjunct Senior Research Fellow, CDDHV, Monash University, Melbourne
Dr Rachael Cvejic Department of Developmental Disability Neuropsychiatry, UNSW Sydney
A/Prof David Godler Group Leader, Cyto-molecular Diagnostics Research, Senior Research Fellow, Murdoch Children’s Research Institute, Melbourne
Dr Matt Hunter Department of Paediatrics, Faculty of Medicine, Nursing and Health
Dr Claudine Kraan Murdoch Children’s Research Institute, MelbourneSciences, Monash Hospital, Melbourne
Dr Danuta Loesch-Mdzewska School of Psychological Science, La Trobe University, Melbourne