Welcome to the BDFA newsletter December edition. The team has been working really hard to get the newsletters going again after a long break. We hope you enjoy the update. Wishing you all a Merry Christmas and a very happy…
Taysha Gene Therapies has announced an important milestone for the Queen’s University clinical trial for TSHA-118, a CLN1 disease clinical trial funded by Taysha Gene Therapies. Please read the community letter here http://www.bdfa-uk.org.uk/wp-content/uploads/2021/12/CLN1-CTA-Community-Letter_v3_121621_FINAL.pdf
Boris the BDFA bear has some big news! He is off on his long awaited UK tour! Like the rest of us, Boris had his holiday plans cancelled last year due to COVID so now he’s is making up for…
Wednesday 15th December, 10.30-12.30- via zoom As part of our ongoing partnership with Rett UK and Demelza This is a session for families who may have a new diagnosis and are applying for DLA for the first time, or there…
It's the first year of these very special BDFA awards, celebrating best practice across the UK among people supporting and working with our children, young people and adults with Batten Disease.All our winners and those specially commended have been nominated…
We are so excited!! The Christmas Charity single in aid of the BDFA is released on Friday 3rd December and you can order a copy on limited edition CD now! See David's link below...We can't wait! Stay The Same (Featuring…
Starting on the 6th December Ecclesiastical will be giving away ten £1,000 grants each day for twelve days, to charities that have the most nominations! This award would mean a lot to us and be a great help, as we…
Happy Birthday BDFA!2021 marks the 20th anniversary of the BDFA becoming a registered charity! So to celebrate this mile stone for the BDFA, we are having a party!Sadly we would love it to be in person, but we will have…
UK zoom session with Professors Jon Cooper (Washington University) and Sara Mole (UCL) Come and find out all about the presentations at the NCL 2021 conference (held recently in St Louis in the US) and about the latest research into…
We have big news, long post alert, but so worth it! It’s national befriending week this week and what better time to announce that we have secured funding for a new peer befriending project, sitting at the heart of the…