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…
Dr Joanna Nightingale- Head of Scientific Affairs
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…
Lisa Forsyth- Team Admin Officer
Lisa joined the BDFA in October 2017 helping 2 hours a week, the role quickly progressed and Lisa now work 5 days a week running the BDFA office. No two…
Liz Brownnutt- Chief Executive Officer
Liz joined the BDFA in 2021, originally as Head of Fundraising with 25 years’ experience in the charitable sector and a track record in successfully securing income from grant…
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 Chandler – Fundraising Assistant
Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising team’s work and particularly helping to support fundraising groups…
Sarah Kenrick- Family Support Partner
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…
The BDFA is governed by a committed board of Trustees who bring a range of individual skills to help the BDFA achieve its aims.
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…
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…
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…