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…
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…
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…
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…
Elizabeth Jones- Family Support and Advocacy
Liz joined the BDFA in January 2022 and is a qualified Child & Family practitioner working with families for…
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…
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,…
Rebecca Bower- Clinical Nurse Specialist
I just wanted to take the time to quickly introduce myself to you all. As you are aware, Laura…
Boris – Official Mascot
Hi! I am Boris The Bear, I am the official mascot for the BDFA. I live in the BDFA office…
Amanda Mortensen – Chief Executive
Amanda has been working in the voluntary sector for 15 years, setting up community groups and then going on to…
Lisa Forsyth- Team Admin Officer
I joined the BDFA in October 2017 helping in the office 2 hours a week, I now work 5…
Laura Lee – Clinical Nurse Specialist
I started the role of Clinical Nurse Specialist for Batten disease in October 2016. I am a qualified paediatric…