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Sian Fisher BDFA

The BDFA is delighted to announce the appointment of Sian Fisher as the charity’s new head of Family Support and Advocacy. Sian will be responsible for all aspects of support and will be tasked with developing our support and advocacy services to provide exemplary support from the point of diagnosis and through the journey with Batten disease.

Sian has over 20-years-experience working with children, young people and adults with profound disabilities and rare diseases across education and social care sectors. During her career, Sian has managed care teams, headed up a residential setting and led an after school club for children with disabilities. In her most recent role, Sian led a pastoral care team at a primary school supporting children and their families, providing support with EHCPs, therapies, funding and bereavement.

Sian has also worked as a specialist carer for young people with profound disabilities. “Being part of the family journey has given me a unique experience and I believe a better understanding in how to support families,” said Sian. “I feel passionate about supporting families and I am looking forward to working with you all.

“Sian has invaluable experience and we were particularly impressed by her empathic and person centred approach to her work with families. We are really looking forward to working with Sian and seeing the team and services develop.” said Amanda Mortensen, Chief Executive.

Sian lives in West Sussex with her partner and two extremely naughty cats Belle and Scamp. In her spare time she enjoys exploring the countryside.

Contact Sian at or or on 07876712553 she will be endeavouring to make contact with every family over the next few weeks.

We hope you will help us welcome Sian to the BDFA team!


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