Dr Joanna Nightingale- Scientific Officer.
Jo joined the BDFA in June 2022 with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research as well as in education, dissecting…
Mimi Petty- Peer Befriending Coordinator
Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to families as the founder and volunteer facilitator…
Sarah Kenrick- Batten Behaviour, Adults and Transitions Specialist
Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered…
Gurdev Singh- Community Fundraising Officer
Gurdev is the Community Fundraising Officer at BDFA, taking the lead on all aspects of community fundraising. The role involves developing and nurturing relationships with our amazing supporters. With over…
Elizabeth Jones- Family Support and Advocacy
Liz joined the BDFA in January 2022 and is a qualified Child & Family practitioner working with families for over 16 years in both voluntary and public sector. Liz…
Sian Fisher- Head of Family Support and Advocacy
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…
Liz Brownnutt- Head of Fundraising
As Head of Fundraising for the BDFA, Liz is responsible for growth of income to achieve long-term sustainability. Liz, from Shipley, West Yorkshire has 22 years’ experience as a…
Gareth Holmes- Trustee- Fundraising Lead
Gareth has led the Fundraising and Communications Team at the Helen Bamber Foundation since 2014. Gareth has more than ten years' charity sector experience, specialising in corporate and organisational…
Zlatko Sisic- Trustee- Chair of Trustees & BDFA Medical and Scientific Lead
Dr Zlatko Sisic has joined the Board of BDFA as the Medical and Scientific Lead in February 2020, and became the Chair at the beginning of 2021. He graduated…