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…
Wendy Thompson- Family Support Officer (North)
I originally qualified as a Nursery Nurse, working with families and young children with disabilities within local Health Authorities, working alongside multi-disciplinary teams (i.e. consultants, physios, specialist nurses etc.) Since…
Borris – 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- Office Staff
I joined the BDFA in October 2017 helping in the office, I now work 2 days a week here helping wherever needed with office duties and supporting the Chief…
Cathy McSweeney- Family Support Officer (South)
Cathy McSweeney is the Family Support Officer for the South. I have worked mostly in educational and respite establishments with children with a variety of disabilities, including those with…
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 – Secretary
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…
Neil Dunford – Trustee
In 2014, Yanna, Neil’s daughter was diagnosed with CLN2 Batten Disease and within a short period of time Neil and his family relocated to Rome to join a Clinical Trial…