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Here at the BDFA we want to say a MASSIVE THANK YOU to all of our families in the UK who attended the BDSRA annual family conference this past weekend, and thank you to all the other families all over…

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Brineura In The Eyes Funding Target Smashed!

The BDFA is absolutely delighted to announce that through the incredible hard work of families, the target for the compassionate use programme at Great Ormond Street (GOSH) has been not just met but exceeded. The total amount raised is £212,749.51…

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William’s Story

“We have enough worry to deal with daily. Constant battles are exhausting and so unnecessary” William is 18 and has CLN3. His mother, Maria Minns, talks about how she has always had to fight to get William what he needs,…

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Sheyne & Amber’s Story

“On a day to day basis we don’t think or talk about Batten disease unless we need to. We don’t let it rule our lives.” Chantelle Cammack, mother of Sheyne, 14, and Amber, 11, who both have CLN2 Batten disease, …

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Adam Ockelford, The Amber Trust

“Through music, the children were able to bond with each other and work together.” Adam Ockelford, professor of music at the University of Roehampton and founder of The Amber Trust, tells the story of how his charity uses music to…

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Louis’s Story

“A lot of things have changed over the years, and sometimes I get upset looking at old videos of things Nicole used to do but now she can’t” 10-year-old Louis is brother to Nicole, 9, and Jessica, 5, who both…

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Sally’s Story, The Maypole Project

“In 2003 The Maypole Project was founded; a unique provision specifically for families with children with complex medical needs.” Sally Flatteau Taylor, Founder, CEO and Lead Therapist at The Maypole Project tells her story of working with Battens families In…

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Bertie’s Story

“We cherished the pure joy of holding our boy and soaking up the peace.” Mimi Petty, whose youngest son Bertie died from CLN1 Batten disease aged 4, explains why she set up Bertie’s Helpers and the work they do for…

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David’s Story, Friend & Supporter Of The Batten Community

“I wasn't sure what I could do to help, so, as well as other fund raising I chose to release music.” David McGovern, who owns the record store Beyond Vinyl in Newcastle Upon Tyne, tells the story of why he…

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Consultant Paediatrician, Dr Richard Brown’s Story

“The big thing that has changed during my career has been the development of effective treatment for CLN2 – we can now treat children to help them avoid losing skills.” Dr Richard Brown shares his story of treating children with…

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