FXAA Board and Committees
Fragile X Association of Australia (FXAA) is an Incorporated Association governed by a Board elected by the members.
President: Graham Hook
Graham’s son James is a young 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.
Secretary: Judith Lenart
Judith is an experienced director of both corporate and not-for-profit organisations in Australia and New Zealand. Judith has served on seven boards including two terms recently completed on the council of CatholicCare Broken Bay in Sydney. In New Zealand Judith established an AIDS trust, founded and managed a private school, was a youth mentor and busy mother. She is qualified in property valuation, natural health and school trusteeship, and is a consultant in life sciences investment. Through this involvement Judith became aware of Fragile X syndrome and appreciates the opportunity to be actively engaged with FXAA. Judith is based in Sydney and joined the Board in October 2014.
Treasurer: Lisa Ryan
Lisa has worked across several countries, primarily in banking and consulting roles with a strong focus on technology, process improvement and use of digital channels. After completing an MBA and halfway through a Doctorate in Leadership, this academic path was paused when time eluded her on the road to motherhood. Lisa has a strong finance background and a network of professionals that may help to support marketing or fundraising activities. Although not directly affected by Fragile X, Lisa has two young boys that have been diagnosed with Autism Spectrum Disorder which provides an understanding of the path that families need to follow, and she appreciates this opportunity to be involved with FXAA. Lisa is based in Melbourne.
Cathy is a registered occupational therapist and coach who has extensive experience working with children with developmental disabilities and their families. Cathy has worked in government, and the not-for-profit and private sectors. She was the founding director of a large private therapy services practice and also the state-wide manager of a service providing multi-disciplinary team therapy services to children in Victoria. Cathy has worked with many families with Fragile X syndrome, presented nationally and internationally on the topic of Fragile X syndrome, and participated in the FACHSIA BetterStart Expert Reference Group representing Fragile X syndrome. Cathy currently works as an OT, coach, speaker and author. She recently published the book “Becoming Chief: How to lead your child’s special needs tribe”. Cathy is based in Melbourne and joined the Board in 2013.
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 5 and Hannah aged 7. 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 non-profit sector in Hong Kong for more than a decade and currently runs Fragile X Hong Kong. He 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 is based in Sydney.
Nadene has led corporate, marketing, product and business development strategy for a range of media businesses, as well as organisational, marketing and funding strategies in the not-for-profit sector. Nadene is passionate about increasing health literacy and outcomes. Most recently this has involved contributing to the growth of an educational health TV and patient brochure board network in over 3,500 General Practices around Australia. Nadene is a current Director on the Board of The Right Direction Australia, holds a Masters of Business Administration (MBA) and is a current member of the Australian Institute of Company Directors. Nadene is based in Sydney.
Katherine is English and moved to Australia in 2006 with her husband David. Together they have two children. Samantha is 8 and has not been tested for Fragile X. Andrew is 6 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 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).
Dr 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
Dr 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
Professor Sylvia Metcalfe
Group Leader, Genetics Education and Health Research, Murdoch Childrens Research Institute and Professor in Medical Genetics, Department of Paediatrics, The University of Melbourne
Dr Robyn Iredale
Member, Fragile X Association of Australia
Dr Tim Turpin
Member, Fragile X Association of Australia
Dr Claudine Kraan
Murdoch Childrens Research Institute, Melbourne
Dr Rachael Birch
Department of Developmental Disability Neuropsychiatry, UNSW Sydney
ENDOWMENT FUND COMMITTEE
The committee manages the Fragile X Association Endowment Fund
(See Endowment Fund page)