On June 5th we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…
We are always humbled by the incredible efforts that our fundraisers go to, to raise awareness and vital funds for our work. Jenny Shackleton is the aunt of beautiful Amber Jutla, and is not just running races but completing the…
Congratulations to our patron Andrew Strauss on being appointed Director of Cricket at the England and Wales Cricket Board, the top job in English cricket. We would like to thank Andrew for his continued support of the BDFA, and his…
WESC Foundation - Open Day - 2nd June 2015
Professor Jon Cooper has just been informed by Kings College that his laboratory will be moving between the 15-19th June. As you are aware, this is the same week that we had planned to have the PSDL/BDFA Lab Open Day for…
Claudia Alejandra Soto has just completed a Tough Mudder Challenge, ahead of doing the London 10K in July. If you would like to support her, visit her Just Giving Page!
Jenny Shackleton ran the WOLF Run to raise money for the BDFA. Although really cold, she did an amazing job and completed the course! Have a watch of the video! https://www.youtube.com/watch?v=NCA-xqUoBPw&feature=youtube_gdata&app=desktop
Our Newsletter and Bulletin are now available for download below. Please have a read! Spring Newsletter 2015 Spring Bulletin 2015
Dreams Come True Charity are a UK national charity that fulfil dreams and wishes for children and young people aged between 2 and 21 years old. They can help with meeting an idol, visiting a special place in the UK…
Disability Living Allowance (DLA) is the main benefit to help meet the extra costs of having a disabled child. Yet when your child is in hospital for a long time DLA is taken away. Families tell us the extra costs…