Dear Families, The LSD Collaborative is a group of 11 charities supporting lysosomal disorders. They have prepared a survey for families, individuals and carers of the LSD Community living in the UK. It is designed to help them understand the…
Dear Families,The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 7pm on Thursday 4th July 2024.The purpose of the meeting is to provide families with an update from the team and…
The CLN group meetings have been running for 6 months now and it has been fantastic to see so many of you join us for these regular events. The next 6 months meetings have now been scheduled and you can…
Lynsey Dent, one of our BDFA Peer Befrienders, speaks on this podcast about what it’s like to be a bereaved parent, after she lost her children Ellie Mae and Caleb to Batten disease. She also speaks about how our BDFA…
A HUGE THANK YOU to everyone who has donated so far, we have had an incredible response to the Text to donate campaign. Text the word BATTEN to 70085 to donate £10 to the vital work of the BDFA to…
How CLN2 Batten disease changed our life: “A Mother’s Love” My name is Gail Rich and our two daughters were both diagnosed with CLN2 Batten disease in late 2016. We also have a son, Louis, who is 13 years old.…
Anneka is proud Grandma to Holly and Max who have CLN2, she tells us about them. I am Grandma to Holly aged 5 and Max 3. There diagnosis of Batten Disease in December 2022 was such a massive shock. I…
Faith shares her story about her older brother Matthew who has CLN1 Batten disease I have done some research over the years and have never known of an individual with Batten disease getting to the age Matthew has.When Matthew started…
Beatrice's mum Anna tells us their story Beatrice has Batten’s disease CLN2.Bea is a playful little girl, who has many friends and lots of passions. With her striking blonde hair and her awesome fashion sense, Beatrice is one of a…
Hi everyone we would like to share this picture of our daughter Charlotte with you, she has CLN3. As a leap year baby she was 32 years old on the 29th February 2024 on Rare Disease day. As you see…