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Email Issues

We have been made aware that some of our emails this week have not been getting through to you. We are working with our email provider to see if there is an issue and to sort this ASAP. If you…

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Conference Update

Dear All, It is with regret that we inform you that we have made a difficult decision to cancel the BDFA family conference later this year. We do not have the logistical capabilities to organise such a large event at…

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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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Children’s Hospice Grant Campaign, News From Together For Short Lives

Dear Families, Many families in the Batten community rely on their local children's hospice for essential support that mainstream NHS services are already struggling to provide. The news from Together for Short Lives regarding the ending of NHS England grants…

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Really Encouraging News Of Preliminary 6-month Results In The Phase I/II Trial Of Batten-1 In Batten Disease (CLN3)


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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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A Poem From Mum Alison For Her Son Joshua

For Awareness day this year, Alison wanted to share her poem about her son Joshua. Smile Last night I watched you sleeping and I wondered what you saw. Do you dream in colour? Are you running? Singing your favourite songs?…

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Aimee Talks About The Daily Struggle With Batten Disease

Aimee is mum of Issac who has CLN2, she tells us about the daily fight against Batten disease. 🧡 Together we WILL make a difference 🧡 #battenday2023#showusyourorange#battenawareness#bdfa#battendisease@bdsra @bdfabattendisease

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Harry’s Mum Cheryl

This is Harry! He has CLN3 Batten disease. His mum Cheryl shares about his diagnosis. #battendiseasebattenday2023

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Sophie’s Story

Our journey with Batten disease started 9 years ago when after months of trying to fathom why our daughter Isabel who was 3 at the time was struggling with a whole host of minor issues with speech and language, coordination,…

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