General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Andrea West – BDFA Chief Executive

Andrea West – BDFA Chief Executive

Andrea West is the Chief Executive of the Batten Disease Family Association.  She completed her BSc in Psychology and her Masters in Research Psychology before beginning a research career in…

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Lucy Roose – BDFA Office Manager

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…

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Harriet Lunnemann – Support & Advocacy Partner

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…

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Gaynor Heeson – Fundraising Officer

Gaynor Heeson – Fundraising Officer

I joined the BDFA in November 2014.  I have had a career break to raise my twin girls who have just started school.  I have a strong administration and event…

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Heather Band – BDFA Research Officer

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…

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Laura Codd – BATCure Administrator

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…

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Sarah Parke – Fundraising Administrator

Sarah Parke – Fundraising Administrator

I am thrilled to join the BDFA family as a part-time Fundraising Administrator and look forward to helping the team support families and friends with their fundraising efforts. I have…

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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

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…

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Roger Cole – Treasurer

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…

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Catherine Sermon – Trustee

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…

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Pauline Docherty – Co-Chair

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…

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Neil Dunford – Trustee

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…

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James Jeynes – Trustee

James Jeynes – Trustee

James is father of Lewis Jeynes, who was diagnosed with Batten disease in 2014.  For many years Lewis remained undiagnosed and James hopes to make people more aware of Batten…

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You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.