General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Mark Thompson- Treasurer

Mark Thompson- Treasurer

Mark joined the BDFA as treasurer in 2023.

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Sarah Chandler – Fundraising Assistant

Sarah Chandler – Fundraising Assistant

Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising team’s work and particularly helping to support fundraising groups…

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Dr Joanna Nightingale- Head Of Scientific Affairs

Dr Joanna Nightingale- Head of Scientific Affairs

Jo joined the BDFA in June 2022 with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research as well as in education, dissecting…

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Mimi Petty- Peer Befriending Coordinator

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 well known to families as the founder and volunteer facilitator…

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Sarah Kenrick- Family Support Partner

Sarah Kenrick- Family Support Partner

Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered…

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Liz Brownnutt- Chief Executive Officer

Liz Brownnutt- Chief Executive Officer

  Liz joined the BDFA in 2021, originally as Head of Fundraising with 25 years’ experience in the charitable sector and a track record in successfully securing income from grant…

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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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Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease