Barbara was the inaugural President of FASA, and has a background in nursing and Public Health. Chris, FASA’s 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.”