General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Interim CEO Announcement

We are pleased to announce that the Trustees of the BDFA have invited Liz Brownnutt to step up to the role of Interim CEO until the end of February 2024 and she is delighted to accept.  We believe that Liz…

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Message From The CEO

I have taken the difficult decision to step down from my role as CEO at the BDFA. I wanted to take the opportunity to thank the dedicated staff team and all of the incredible professionals, organisational partners, colleagues and trustees…

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BDFA Family Support Service – Update

Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…

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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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Welcome To Sarah, BDFA New Fundraising Assistant

We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…

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Dr Joanna Nightingale, BDFA Scientific Officer In New Role Of Head Of Scientific Affairs

The BDFA is very pleased to announce that Dr Joanna Nightingale, our part-time Scientific Officer, will take up a new expanded role from April. Joanna will take up the role of Head of Scientific Affairs, a full-time post which will…

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Welcome To Dr Joanne Nightingale As Scientific Officer To The BDFA

We hope you will join us in wishing a warm welcome to Dr Joanne Nightingale as our new BDFA Scientific Officer. Jo has with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research…

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Staff News- Mimi Petty, Our New Peer Befriending Coordinator

BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new 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…

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New Head Of Fundraising, Welcome Liz Brownnutt

The BDFA team is delighted to announce that Liz Brownnutt, our new Head of Fundraising starts today. This is a key appointment as the charity moves to diversify its income and build a sustainable future, offering the very best we…

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Donate to the BDFA

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

Thank you for making a donation to the work of the BDFA.

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