We are

Fanconi Anaemia Support Australasia

Bringing together people and families affected by FA in Australia, New Zealand and beyond.

How we started

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.

Barbara and Chris Hawkshaw

FASA today

Fanconi Anaemia Support Australasia (FASA) is a not-for-profit membership based, Incorporated association.  It is governed by a committee of its members.

FASA is in the process of becoming a Charitable Institution and Deductible Gift Recipient.  At this time however, any financial gifts are not tax-deductible but still greatly appreciated.

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.

 

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.

Hannah Fluhler

Hannah Fluhler is a US trained registered nurse with expertise in neonatal intensive care. She has recently joined the Genome Stability Unit at St. Vincent’s Institute as a Fulbright Scholar because of her personal connection to Fanconi Anaemia. In the lab, she is fighting FA— thanks to funding from the Fulbright grant and the Fanconi Anemia Research Fund— by creating a new quick blood assay to help infants and children reach diagnosis sooner; she is also working alongside a large team of experts to recruit individuals with FA and their families into a multi-site research study.

Hannah babysat a little girl named Aria until she passed away from Fanconi Anaemia shortly before her 5th birthday. Aria became the root of Hannah’s passion for helping others in the medical field and for FA research. Hannah has volunteered three years running during FA week at Camp Sunshine in Maine, where she has met doctors, researchers, and dozens of other children and adults with FA, their siblings, and their carers. Ultimately, Hannah hopes to continue helping individuals with FA and other children with complex illnesses by working as a neonatologist or neonatal nurse practitioner, contributing both to clinical and research in related fields.

Beyond research and nursing, Hannah’s favourite job is being an aunt to Leah, Ethan, and Leo. She can be found tap dancing all over Melbourne or on the beach in St. Kilda. She plans to continue her work on the FA study and with the Fanconi Anaemia Support Australasia board long after her return to the US!

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
([email protected])
or through Facebook, at any time.

Stacey Lee Andrews

I live in northern New South Wales with the fur kids – three greyhounds and a cat – and occasional greyhound visitors waiting for new homes.
I remember sitting in the doctor’s office when I was about nine years old, after my bone marrow had failed and they diagnosed FA. I wanted nothing hidden from me, and the doctor was telling me I probably wouldn’t see my 21st birthday. And I thought, “No thanks. Not going to happen.” I’ve always maintained that level of positivity and thirty years later I’m still strong and still keen to beat the statistics.
Anabolic steroids got my bone marrow working again, and they’ve kept it working ever since. I’ve had plenty of health battles over the years – thanks FA – but my motto has always been “prepare for the worst but expect the best”.
My biggest turning points have come through meeting and getting to know other FA patients and family, first here in Australia, and then everywhere else through FARF in the US. You don’t realise the impact that’s going to have until it happens. I’d talked to people online – I set up the Australia/NZ Facebook page in 2012 – so I had FA friends. But then I went to the FARF meeting in Baltimore, and it hit home. These people are real. I laughed and cried with them. It was like finding a whole new family.
Now I’m in the best place I’ve been for ages. I hope FASA can help build that FAmily downunder for all of us.

© Copyright 2020 Fanconi Anaemia Support Australasia Inc.

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FASA Statement
on COVID-19

Because of the concern for transmission of illness caused by a novel coronavirus, Fanconi Anaemia Support Australasia is preparing for the possibility that this virus may impact our two significant gatherings: the SNUG camp meeting (Lake Macquarie, August), and the FAmily meeting (Melbourne, October). While it is too early to predict how these events may be affected, we want you to be aware that we are mindful of the risks associated with gathering at this time. We will also be carefully monitoring the appropriate health authority recommendations for protecting against exposure provided by the Australian Medical Association (AMA) and the World Health Organization (WHO).
The National Organization for Rare Diseases (NORD) recommends that you speak with your doctor to see how they may be able to advise you if you should become exposed to the virus. Finally, should you or a loved one need to travel, review the Australian Government’s Department of Health guidelines to ensure you aren’t putting yourself or others at risk.
We will continue to monitor and follow guidance from the AMA, the Australian Government, and other agencies and communicate with the FA community directly as the situation develops.