Hello, I am Steph, I am the Matron of the Batten’s service in Manchester. As a newly qualified nurse in 2012 I worked in Stoke on Trent where I trained, and I worked on a surgical and oncology ward. In…
Beatrice is 4 years old and was diagnosed last July with CLN2 Batten Disease. Her mum shared with us, ''Here is a video of Beatrice playing football on the beach recently, we are so happy she is still able to…
We are pleased to share this blog, written by Evan, in memory of his cousins, Ellie Mae and Caleb who both had CLN2 Batten disease: “Whoever said, “Never meet your heroes” obviously had the wrong ones. Because I’ve met my…
Anna's mun Laura shares the highs and lows of her diagnosis Anna was diagnosed with CLN3 Batten disease two years ago. She struggles with depression, anxiety, hallucinations, sleep and terrible meltdowns. It is the most devastating and heartbreaking disease. Anna…
BDFA Trustee Bob shares his family story about his son Frank Heart-breaking news In October 2012 a Neurologist gave us the worst imaginable news. The youngest of our three children, Frank, was diagnosed with Late Infantile Batten Disease, a rare,…
Today is to raise awareness and celebrate the people in our community but we also remember to families who have lost loved ones. On Batten disease awareness day we remember all of the children and young people who we have…
We are looking forward to celebrating the incredible families in our community and raising awareness together. Today can also be also be difficult for families affected by Batten disease and we send our love to you all.
Here is Lisa, our Team Admin Officer, raising awareness in her BDFA T shirt and sharing her thoughts on awareness day, as well as our Text to Donate campaign details. Thank you so much for your donations so far, your…
It has been amazing to see all the support for Awareness Day so far this week, and we are looking forward to turning our social media orange tomorrow! Thank you so much to everyone getting involved, please tag us in…
BDFA Peer Befriending Team had a weekend away together in London in April, organised by Peer Befriending Coordinator Mimi Petty. The team met together in person to receive training and also to spend time together, offering one another support. ‘Thank…
