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…
Rebecca Bower- Clinical Nurse Specialist
I just wanted to take the time to quickly introduce myself to you all. As you are aware, Laura Lee will be starting maternity leave in May and I…
Boris – Official Mascot
Hi! I am Boris The Bear, I am the official mascot for the BDFA. I live in the BDFA office and make sure everything is running smoothly. I love going…
Amanda Mortensen – Chief Executive
Amanda has been working in the voluntary sector for 15 years, setting up community groups and then going on to chair the local Parent Carer council in Brighton & Hove.…
Lisa Forsyth- Team Admin Officer
I joined the BDFA in October 2017 helping in the office 2 hours a week, I now work 5 days a week here helping wherever needed with office duties…
Laura Lee – Clinical Nurse Specialist
I started the role of Clinical Nurse Specialist for Batten disease in October 2016. I am a qualified paediatric nurse with experience in general paediatrics, neurology, metabolics and research.…
The BDFA is governed by a committed board of Trustees who bring a range of individual skills to help the BDFA achieve its aims.
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…
Bob Thompson- Trustee
Bob Thompson is parent to Frank (12) who has CLN2, Kirk (20), Mae (17) and Blue the dog. Bob is also a screenwriter, producer, business consultant and university lecturer…
Simon Sewart- Trustee
I am a father of two boys Max (9) and Felix (6). Max was diagnosed with atypical CLN2 in 2019 at the age of 7. Max is currently receiving…
Richard Whitbread – Treasurer
Richard spent over 25 years as a Senior Financial Manager in the Consumer Goods industry retiring in 2014. His main duties were monthly and annual financial reporting and…
Catherine Sermon – Trustee
Catherine is a Campaign Director at a charity called Business in the Community, where she has worked for over 15 years. Over this time she has worked with a wide…
Pauline Docherty – Former Trustee
Pauline is one of the founder members of the BDFA and is married to Jim. Both her children were diagnosed with CLN3. Joanna passed away in 2008 (age 23) and…