Barbara is president of FASA and has a background in nursing and Public Health. Chris, the secretary, is a TV writer. We had not heard of Fanconi Anaemia until our daughter Amelia was diagnosed at age 23, following surgery for bowel cancer and a catastrophic brush with chemotherapy. That was in 2016.
Our learning curve was steep. In 2017 Chris and Amelia had the privilege of joining the Fanconi Anemia Research Fund (FARF) adult meeting in Atlanta, USA. Barbara attended the meeting a year later in LA. It was a life-changing experience. The work FARF does in funding research and bringing scientists together is awe-inspiring. But it is the sense of community gathered under FARF’s banner that affected us most. Meeting other FA adults and kids, meeting their families and carers, sharing our different-but-similar FA journeys – this was a revelation to all of us.
FARF and the Family offer hope. We’ve learnt that hope is one of the most powerful forces in our lives. We would like this local support group to build on that hope.

Alan is the Treasurer, and lives in Adelaide, South Australia.  Alan has been connected to the Fanconi Anaemia community since 1998 when he married his late wife Charisse, an FA adult (now deceased).

Alan has over 25 year’s working experience in the private sector, covering business management and administration, customer engagement and technical support roles within the commerce, healthcare, finance and manufacturing industries.

He has broad experience in financial, Human Resource, project management and operational aspects of small to medium enterprise, and currently works for Tindo Solar, the Australian manufacturer of solar PV panels.

Alan has been involved with numerous not-for-profit organisations of varying size over the years, and presently sits on the District Committee of Australian Rotary Health Ltd, and is President of the Rotary Club of Modbury Golden Grove.

Wayne is a researcher at St Vincent’s Institute of Medical Research (SVI) in Melbourne. His team is focused on understanding Fanconi anaemia and he is passionate about making a difference to people affected by FA through fundamental research and through FASA. Wayne, Hannah Fluhler and a large team of experts have a research study open, which individuals with FA and their families can participate in.

Wayne is from Adelaide where he obtained his PhD and came to SVI after overseas roles as an academic postdoc and group leader in industry. Since being at SVI his laboratory has received funding from the National Health and Medical Research Council, the Fanconi Anemia Research Fund and Maddie Riewoldt’s Vision.

When Wayne is not in the laboratory he likes spending time with his family, reading, trying to master foreign languages, playing sports, listening to and playing music and watching AFL, despite suffering from anxiety when his team, the Adelaide Crows, plays.

My name is Amelia and I live in Sydney, Australia. I was diagnosed with FA in 2016 when I was 23. It was identified after I had chemotherapy for bowel cancer, and my body reacted pretty negatively to it! I haven’t been transplanted. I have a team of doctors at Chris O’Brien LifeHouse in Sydney who help me manage any issues and do my screening. I am currently a youth worker with Fusion Sydney South, helping young people realise their potential. I am excited to be part of FASA and hope to bring patient voice to our advocacy and services! I am currently also involved in FARF in America, through the FAdult Council – a group of adults who aim to empower all adults with FA as one community. Please feel free to contact me for a chat, a question or advice, via email
(ameliahawkshaw@hotmail.com)
or through Facebook, at any time.

Harvey is a Chartered Accountant and has more that thirty years experience, qualifying in the UK before moving to Australia in 1999. Harvey has held senior finance roles in industry and is currently the CFO of an advanced manufacturing business. Harvey has an MBA from the Australian Graduate School of Management. 

Outside of work Harvey is an elected councillor for the City of Burnside in Adelaide and a member of its Audit Committee, as well as the Audit Committee of ERA Water.

David is a lawyer and policy advisor from Sydney, Australia working within the NSW court and tribunal system. He was formerly a senior policy advisor to the NSW Minister for the Environment and was admitted in 2022 as a solicitor of the Supreme Court of NSW.

David is highly active in the local and global Fanconi Anaemia community. He is currently a member of the Fanconi Anemia Adult Council, a sub-committee of the Fanconi Anemia Research Fund in the United States. His role on the Council includes providing input into the activities of the Research Fund globally and contributing to its strategic direction. He is also a Committee Member of Fanconi Anaemia Support Australasia. David is well-known in his local community from his previous roles advising local politicians and a NSW Government minister, and maintains strong connections with community organisations, peak bodies and stakeholders. Since 2015, David has served as secretary of a local branch of the NSW Liberal Party (NSW Division).