Congratulations to Sophia who has been awarded the degree of PhD today. This a fantastic achievement and one we can all take great pride in as all your efforts funded her studies. This is an important career step for Sophia and rewards…
Is your New Year's resolution to get fit and have fun? And to raise money for the BDFA whilst doing it? Then sign up for the Vitality British London 10K, staged through the heart of central London passing many of…
Starting from 2015, Jennifer Shackleton has been on Obstacle Course Racings to raise money and awareness for BDFA and Batten Disease. Her latest run was in Coventry, last weekend, on 9th of January. Thank you, Jennifer for all your hard…
We are delighted to announce that Duncan Brownnutt and Rod Wark have been awarded the UK Prime Minister's award of the Points of Light. The award recognises those outstanding volunteers who make a change and Duncan and Rod have certainly…
Support the Batten Disease Family Association (BDFA) to raise vital funds by sending your used stamps to us. How it works: Simply send us your stamps and we will do the rest! We then send the stamps off to be…
We are delighted to announce our fabulous fundraising event - Climb Ben Nevis Ben Nevis (Gaelic translation “Mountain of Heaven”) is the highest point in Scotland and the British Isles, standing at a height of 1343m (roughly 4000ft). Fort William, on…
Breaking news for Batten Disease "Our study opens up the possibility of a one-and-done treatment for this form of Batten disease," said Beverly Davidson, Ph.D., director of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics at Children's Hospital…
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…