General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Katie’s Fundraising Story

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…

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The Amber Trust Launches Major New Music Service, With Music In Mind In Association With The Amber Trust

With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust's pioneering new music service for families who have a visually impaired child with neurodegenerative disease, such as Batten disease. This webinar…

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Notice Of Annual General Meeting Of The Batten Disease Family Association 2020

Notice of Annual General Meeting of the Batten Disease Family AssociationNOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held virtually via Zoom,at 1pm on Saturday 21st November 2020.We are hoping to…

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Save Our Children’s Sight Campaign- Children With CLN2 Batten Disease On Brineura

Following on from yesterday’s announcement about the restarting of our research function, the BDFA is pleased to announce our collaboration with a group of families who have children with CLN2 and are accessing enzyme replacement therapy (ERT). This campaign is…

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BDFA RESEARCH ANNOUNCEMENT

We are writing to announce our intent to restart research activities funded by the BDFA, in collaboration with families. As you know, we had to pause this. Research is a key commitment in our plans and we are excited to be…

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Brineura® Recommended For Use In Scotland

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…

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The BDFA Is Excited To Announce Their Support Of A Brand New, Family-led Project.

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…

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Looking For A New Fundrasing Role?

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…

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National Lottery Fund Award

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…

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POST TO THE BDFA- URGENT UPDATE

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 (209-211 City Road). There is an issue with the redirect currently which…

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