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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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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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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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.