Fanconi Anaemia Support Australasia
Bringing together people and families affected by FA in Australia, New Zealand and beyond.
Fanconi Anaemia Support Australasia (FASA) is a not-for-profit membership based, Incorporated association. It is governed by a committee of its members.
FASA aims to bring together people and families affected by FA in Australia, New Zealand and beyond by creating opportunities for connection through camps, family meetings, social media and through the incredible bond which is created when two or more gather with such a rare disease.
Our Objects
- To provide relief to families suffering Fanconi Anaemia, through financial and material assistance, and support to families in necessitous circumstances
- To provide opportunities for all people with Fanconi Anaemia, from all over Australia, New Zealand, and beyond to socialise, communicate and share their experiences with a view to promoting optimal coping.
- To encourage patient and family members of patients to support each other.
- To promote awareness of the disease Fanconi Anaemia in the general community
- To provide medical, treatment & research updates relating to Fanconi Anaemia or a symptom thereof to patients & doctors
- To provide financial sponsorship to families with children or adults suffering with Fanconi Anaemia for the purpose of medical, emotional or psychological treatment directly or indirectly relating to Fanconi Anaemia.
- To provide support to scientific research into treatment and a cure for Fanconi Anaemia through advocacy to government, research grant organisations and the health system, as well as the encouragement of fundraising targeted at research.
Meet the Committee
Barbara & Chris Hawkshaw
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 Howard-Jones
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.
Dr. Wayne Crismani
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.
Amelia Hawkshaw
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 Jones
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.
