Katie’s Fundraising Story My family has recently found out devastating news that my amazing nephew has a terminal disease, CLN6 Battens disease, which will progressively take his vision, motor and neurological functions and we have until possibly early teens with…
Come and join our team as our new Head of Fundraising.The BDFA is looking to diversify its income streams, secure its future and grow the support it can offer to families.We are looking for a strong fundraiser who has a…
We are very pleased to share with our community that the BDFA has successfully secured a grant from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Huge thanks to @TNLCommunityFund and @dcmsgovuk for helping us continue…
POST TO THE BDFA- URGENT UPDATE 16 September 2020 We are currently not receiving any of the post that is being sent to our head office in London. There is an issue with the redirect currently which fingers crossed will…
“Jessica is living proof that early diagnosis and treatment can change the course of this dreadful disease” Sisters, Nicole and Jessica both have CLN2, and their mother, Gail Rich explains the importance of diagnosing and treating Batten disease early on.\…
“We are not at the end of the journey yet… but compared with 30 years ago, it’s a whole new and brighter place to be” Consultant Paediatric Neurologist, Ruth Williams, talks of the huge progress made from the 1980s to…
“Hannah was happier than any of us… and whether or not she was upset or scared, she never let it show. She was a really strong girl” Liv Batterbee, speaks of family life with her sister Hannah, who lived with…
Auntie Em, is aunt to Ollie, 9, and Amelia, 7, who both have late infantile Batten disease. She talks movingly in this video about the Aunt’s perspective. She talks of her “heart shattering” and the complex guilt family members can…
“As a scientist I am meant to be logical, totally rational. But my work looking at Batten disease is undeniably emotional” Professor of Pediatrics, Genetics and Neurology, Jonathan Cooper tells his story about what led him to working in the…
“The whole family were heartbroken - the devastation, the loss of our children’s future as we had hoped it would be.” Pauline Docherty, who lost her children Joanna and James to CLN3, tells the story of how her journey led…