FXAA Board of Directors and Scientific & 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
Judith Lenart (Treasurer)
Judith is an experienced director with a background in business, eduation and health. She has served on the boards of several companies and charities in Australasia, and was previously a director and secretary of FXAA. Judith is a registered valuer and has served on the finance committee of CatholicCare Broken Bay, and was recently appointed as Treasurer of FXAA.
Christine Kelleher (Secretary)
Christine is based in Sydney and has been involved with the Association for nearly twenty years, including serving on the board and the executive committee. She is a mother of three adult children, two of whom have full mutation Fragile X. Christine is passionate about seeing the Association succeed and sharing her knowledge of raising affected children within the Fragile X community.
Prof Wm Ted Brown
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.
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 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.
In 2011 Nyleta’s first child was diagnosed with Fragile X syndrome, at the age of 2. The family had no Fragile X diagnosis prior to that and subsequently her daughter and nephew were diagnosed with Fragile X syndrome, and Nyleta, her mother and sister were all diagnosed as carriers of the Fragile X premutation. In the past few years her mother has now developed FXTAS, the Fragile X-associated Tremor Ataxia syndrome. As the member of a family that has been impacted in so many ways by Fragile X, Nyleta has chosen to become actively involved with increasing awareness of Fragile X-associated disorders, the impact of NDIS, and providing FX families with better support and medical assistance. Prior to becoming the mother of 3 children Nyleta worked in the IT industry in Australia, Canada and the USA for nearly 20 years. But the role of being a mother is now her focus and by far the most rewarding achievement in her life. Nyleta is based in Brisbane.
Mike is originally from the UK and is married to Helen who is from Sydney. They have two children, Josiah aged 6 and Hannah aged 8. 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.
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.
SCIENTIFIC AND RESEARCH SUB-COMMITTEE
The Scientific & 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, and is currently in recess, pending re-formation.
Prof David Amor
Victorian Clinical Genetics Services, Royal Children’s Hospital, Melbourne
Dr Alison Archibald
Murdoch Childrens Research Institute, Royal Children’s Hospital, Melbourne
Dr Jonathan Cohen
Medical Director, Fragile X Alliance Clinic, Melbourne; Adjunct Senior Research Fellow, CDDHV, Monash University, Melbourne
A/Prof David Godler
Senior Research Fellow, Cyto-molecular Diagnostics Research, Murdoch Childrens Research Institute, Melbourne
Dr Matt Hunter
Department of Paediatrics, Faculty of Medicine, Nursing and Health Sciences, Monash Hospital, Melbourne
Dr Danuta Loesch-Mdzewska
School of Psychological Science, La Trobe University, Melbourne
Dr Claudine Kraan
Murdoch Childrens Research Institute, Melbourne
Dr Rachael Cvejic
Department of Developmental Disability Neuropsychiatry, UNSW Sydney