Lucy Roose – BDFA Office Manager
My association with the BDFA began in 2012 providing administrative services on a part time contractual basis from a virtual office at home. Since my youngest son started school my…
Harriet Lunnemann – Support & Advocacy Partner
I have joined the BDFA as the Support and Advocacy partner. I am a qualified social worker and have a background of working with children with profound and multiple learning…
Heather Band – BDFA Research Officer
I joined the BDFA in September 2012. At university, I studied Chemistry and then joined Cancer Research UK, where I also completed further studies in Biochemistry. I spent over 17…
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. I…
Laura Codd – BATCure Administrator
I have recently joined the BDFA as the BATCure Project Administrator. My background is in the market research industry where I worked on a wide range of qualitative and quantitative…
The BDFA is governed by a committed board of Trustees who bring a range of individual skills to help the BDFA achieve its aims.
Michael O’Connor – Chairperson
Mike O’Connor lives in Bentley, Hampshire. He has been married to Alex for 14 years and has 3 children - Lily 12, George, 10 & Amelia, 7. Lily was diagnosed…
Roger Cole – Treasurer
Roger Cole worked in the British Telecom development department on remote computer management and control of equipment and retired in 2006. He has many years’ experience writing technical specifications 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 – Co-Chair
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
Neil Dunford recently joined as a Trustee member for the BDFA this summer. His daughter, Yanna, has the CLN2 variant of Batten Disease. Yanna has been enrolled on the BioMarin Clinical…
James Jeynes – Trustee
James is father of Lewis Jeynes (born in 2004), who was diagnosed with Batten Disease (CLN14) in 2014. For many years Lewis remained undiagnosed and James hopes to make people…
Amanda Mortensen – Trustee
Amanda has 12 years’ experience in the voluntary sector, 20 years’ experience as a journalist and 10-years’ experience as a school governor. She has four children the eldest of whom…