General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Sian Fisher- Head Of Family Support And Advocacy

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 social care sectors. During her career, Sian has managed care…

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Liz Brownnutt- Head Of Fundraising

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…

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Rebecca Bower- Clinical Nurse Specialist

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…

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Boris – Official Mascot

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…

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Amanda Mortensen –  Chief Executive

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.…

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Lisa Forsyth- Team Admin Officer

Lisa Forsyth- Team Admin Officer

  I joined the BDFA in October 2017 helping in the office 2 hours a week, I now work 5 days a week here helping wherever needed with office duties…

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Laura Lee – Clinical Nurse Specialist

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.…

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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.

Gareth Holmes- Trustee- Fundraising Lead

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…

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Zlatko Sisic- Trustee- Chair Of Trustees & BDFA Medical And Scientific Lead

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…

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Bob Thompson- Trustee

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…

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Simon Sewart- Trustee

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…

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Richard Whitbread – Treasurer

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…

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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 – Former Trustee

Pauline Docherty – Former Trustee

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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Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

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

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.