General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Gails Poem, ‘A Mother’s Love’

How CLN2 Batten disease changed our life: “A Mother’s Love” My name is Gail Rich and our two daughters were both diagnosed with CLN2 Batten disease in late 2016. We also have a son, Louis, who is 13 years old.…

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Anneka’s Story

Anneka is proud Grandma to Holly and Max who have CLN2, she tells us about them. I am Grandma to Holly aged 5 and Max 3. There diagnosis of Batten Disease in December 2022 was such a massive shock. I…

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Faith’s Story

Faith shares her story about her older brother Matthew who has CLN1 Batten disease I have done some research over the years and have never known of an individual with Batten disease getting to the age Matthew has.When Matthew started…

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Beatrice’s Story

Beatrice's mum Anna tells us their story Beatrice has Batten’s disease CLN2.Bea is a playful little girl, who has many friends and lots of passions. With her striking blonde hair and her awesome fashion sense, Beatrice is one of a…

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Parents Tom And Marian Share Their Words Of Hope

Hi everyone we would like to share this picture of our daughter Charlotte with you, she has CLN3. As a leap year baby she was 32 years old on the 29th February 2024 on Rare Disease day. As you see…

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Lewis’s Story- We Have All The Time In The World

Meet the incredible Lewis! His mum Samantha tells their story Lewis was born in February 2004, and he was adorable. He did not show signs of illness (aside from usual baby/toddler gripes!) until February 2006 when he had a slight…

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Help Us To Raise Awareness Today And Text To Donate!

Sarah is the BDFA's fundraising assistant, who works tirelessly to support our fundraisers in events throughout the year. Help us to do more for the Batten community in the UK but helping us to raise valuable funds with this years…

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Nel’s Story

Marika is mum to Nel, who was diagnosed with CLN6 Batten disease. She shares Nel's story It's night, and everyone is asleep. Unfortunately, this night isn't one of the nights I'll sleep through. Tears and sorrow have won this night.…

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Steph’s Story, Matron Of The Batten Service At Manchester Hospital

Hello, I am Steph, I am the Matron of the Batten’s service in Manchester. As a newly qualified nurse in 2012 I worked in Stoke on Trent where I trained, and I worked on a surgical and oncology ward. In…

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Meet Beatrice!

Beatrice is 4 years old and was diagnosed last July with CLN2 Batten Disease. Her mum shared with us, ''Here is a video of Beatrice playing football on the beach recently, we are so happy she is still able to…

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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