Life-changing drug for rare and fatal form of childhood dementia made available in Scotland for the first time Today, the Scottish Medicines Consortium has recommended the use of Brineura® (cerliponase alfa) in the NHS to treat CLN2, a form of Batten…
Mimi and Andrew Petty have set up Bertie’s Helpers to honour their son Bertie, who died of CLN1 Batten Disease, aged 4, a year ago. Bertie loved his bunny toys so Mimi and Andrew knew they had to use the…
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…