This October our Family Conference was held at the Village Hotel in Coventry. Families, staff and professionals started arriving on the Friday, meeting up with old friends and making new ones. The AGM on Saturday morning, included a keynote speech…
Its our Family Networking Weekend and you can keep up to date on our Facebook page and Twitter. After the weekend, we will have our video from the event as well as lots of pictures for you to see.
With the help of Greg Mulholland, MP, the BDFA have met with Justin Tomlinson, Minister for Disabled People at the Department of Work and Pensions. This meeting enabled us to talk with him and his team about the process of…
Threats to science funding is a threat to us all, please visit and send an e-postcard to the Chancellor about why science and research is vital for Batten disease. The government is once again threatening research with cuts of 25%…
Our Newsletter and Batten Bulletin are both now available for download. BDFA Newsletter Batten Bulletin
The lovely Harrison family whose son James has CLN1 (Infantile Batten disease) will be raising awareness on This Morning on Monday 5th October. Please watch and let people know, a great platform to raise awareness.
Birmingham Children's Hospital is launching a £3.65 million appeal to raise money to build the UK's first rare diseases centre for children. Read more here
We already knew she was tough, running over 150km of muddy obstacle races this year raising money for the BDFA, and now it's official. Jenny Shackleton has been chosen as one of ITV's, Good Morning Britain's 'Tough Mums'. Watch this Thursday…
Below you can download or read the draft programmes for the conference. Conference Programme Children's Programme
This is a great opportunity for a motivated, highly-organised individual to make a significant contribution as part of a team to the development of a growing charity to help it achieve its Vision of a world without Batten disease.