The BDFA is delighted to announce the appointment of Sian Fisher as the charity’s new head of Family Support and Advocacy. Sian will be responsible for all aspects of support and will be tasked with developing our support and advocacy…
We have moved!!! Yesterday we got the keys to the new lovely BDFA office near Kings Cross in London. It needs a little organising to make it feel like home but we are all really excited!
We are so excited to annouce that the BDFA will have a new home as of Monday 6th September just a short walk from Kings Cross station in London. Boxes are packed and ready to go, and we can't wait!…
The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…
We are delighted to share our news bulletin, the first for some time, with you. We are very excited about our new partnership with the Maypole Project. The Maypole project has been running our Sibling Sanctuary and we are pleased…
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…
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…
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…
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…
