During the month of December Virtual Warrior are raising money for The Batten Disease Family Association (BDFA) to commemorate the life of a very special little girl named Amber, who sadly passed away in February 2016. All you have to do…
We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness and fundraising. For many parents, life’s simplest joys are found…
Francis Mills trained vigorously for the challenge, overcoming the loss of his specialist bike after it was snatched from his workplace in June. Left without his £550 white Trek bike, the fundraiser saw supporters far and wide rush to his…
BATCure is a 3-year research project funded under a European Union call (New Therapies for Rare Diseases). The goal of the project is to advance the development of new therapeutic options for patients and their families living with CLN 3,…
Long-time Batten disease researcher and BDFA Scientific Advisor Professor Jonathan Cooper is leaving King’s College London this summer to take up a new post at the Harbor UCLA Medical Center in Los Angeles. As in London, Jon will continue to…
There are few things more tragic than the sudden death of a child, an event that can leave parents bereft, heartbroken and railing at the unnatural order of things.
Well done to our intrepid team of Ben Nevis conquerors! Apparently it was a lot more difficult than anticipated, so why not support them by donating to the BDFA HERE
Our Education Training Day at Linden Lodge last Friday was a great success. It was great to be able to bring professionals together to network and to learn more about Batten disease. We packed a lot into a short space…
On the 3rd June, 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…
We are pleased to invite you to the 2016 BDFA Family Conference which will be held on: Friday 18th - Sunday 20th November 2016 from 9.30am – 4.00pm at the Holiday Inn Bridgefoot Quay, Warwick Road, Stratford-upon-Avon CV37 6YR There…