Online Family Meetings

Saturday, April 24th and May 1st, 2021

24th April and 1st May, 2021

The FA Support Family Meeting is an annual event that allows families affected by Fanconi Anaemia to attend presentations by researchers and clinical experts who are active in the research and treatment of Fanconi anaemia (FA), and to connect with other families affected by FA.  

Register your attendance now!

Due to COVID-19, meetings are currently held online via Zoom

Day

1

What's happening?

Saturday 24th April

10am

What’s new at FARF?
Welcome and bonding time with friends from the Fanconi Anemia Research Fund: Mark Quinlan, ED; Jordan Deines, Family Services Director and Lisa Mingo, Director. 

Mark Quinlan, FARF Executive Director.
Mark has led his team through some turbulent times recently, with FARF continuing to deliver for FAmilies and the scientific community. Mark will upate us on the latest research initiatives FARFis supporting with US$2million in grants.
Jordan Deines, FARF Family Services Director.
Jordan is a big believer in empowering people with the tools they need to overcome their challenges. She’ll share her insights into the experience and resilience of families she’s worked with in her years at FARF so far.
Lisa Mingo, FARF Board Member, Treasurer.
Lisa has been an instigator of FARF’s increasing international focus. She’ll be telling a personal story about how FARF has impacted their journey and supported her family in Canada.

11:00 - 11:30am

Break for morning tea

11:30am

FA101 A refresher on FA basics and what’s new in the field with Dr Adam Nelson

Dr Nelson is a Senior Lecturer in the Kids Cancer Centre and Staff Specialist in Bone Marrow Transplant and Oncology at Sydney Children’s Hospital. He spent seven years at Cincinnati Children’s Hospital, a world leader in the management of and research into Fanconi Anaemia, where he developed 

expertise in the diagnosis, treatment and research into pathogenesis of FA and FA-related complications. He has deep international connections through his FA and bone marrow failure research work. Dr Nelson has recently been awarded a research grant from the Fanconi Anemia Research Fund to investigate the use of cellular therapy in treating squamous cell carcinoma in patients with Fanconi Anemia.

12:30 - 1:30pm

Break for lunch

1:30pm

Bone Marrow Transplants
Latest news in medical science.

Dr Maria Cancio is a Pediatric Oncologist from Memorial Sloan Kettering Cancer Centre with clinical expertise in Blood & Marrow Transplantation for Children; Benign Blood Disorders; Myelodysplastic Syndrome (MDS); and Rare Blood Disorders.

Day

2

What's happening?

Saturday 1st May

10am

Living with FA.
Hosted by Nancy Cincotta, Psychosocial Director of FARF’s Camp Sunshine. A chance to share experiences and strategies.

Nancy Cincotta, Psychosocial Director
Camp Sunshine
Nancy has extensive expertise working with children with life-threatening illnesses and their families. She has worked with bereaved parents and children in individual and family work, in groups, and in a retreat format. She is widely published in this area and has presented extensively on a national and international level.

11:00 - 11:30am

Break for morning tea

11:30am

Panel Q&A
Brush Biopsy, gene therapy, genetics of FA, and fertility: a research update with Dr Wayne Crismani 

Wayne leads a medical research lab at St Vincent’s Institute in Melbourne. He is passionate about making a difference to people affected by FA through fundamental and translational research. He leads numerous FA related research programs. 

Wayne also chairs a gene and cellular therapies committee in collaboration with the Centre of Research Excellence for Bone Marrow Biology and is actively working with Australia’s leading haematologists to bring a gene therapy clinical trial to Australia for inherited bone marrow failure syndromes such as Fanconi Anaemia.

12:30 - 1:30pm

Break for lunch

1:30pm

From kid to adult
What does best practice look like in transitioning from paediatric care?

It can be daunting for young patients – and their parents – when the time comes for them to move to the adult health system. We’ll talk to a FASA member who’s been through that change in past years. 

We are also joined by network members from Trapeze at Sydney Children’s Hospital and The Children’s Hospital at Westmead Dr Jane Ho, and the NSW state-wide ACI – Agency for Clinical Innovation Transition Care Service coordinators Silvana Techera, and Paula Carroll.
Also, Dr Siobhan Cross will give some insight into what’s happening for transition in New Zealand.

Meet new people and share experiences

Are you ready for some fun?

We’ll be back together soon.

In the meantime, don’t be a stranger and connect online.

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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.