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…
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%…
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
The BDFA is delighted to announce that the BATCure Research Consortium headed up by Dr Sara Mole at University College London has been awarded an EU Horizon2020 Innovation Grant of 6 million Euros to investigate potential therapies for CLN3, CLN6…
We have just pledged our support of the 'Right Chair, Right Time, Right Now' Campaign. This campaign is working to improve the quality and effectiveness of wheelchair services across England. You can pledge your support for this campaign here: http://www.rightwheelchair.org.uk/
We are now back in the office after a group of 80 of us spent the weekend at Bourton-on-the-Water in the Cotswolds for the Batten Disease Family Association 10th anniversary walk. We had sunshine and showers to make it a…
Dear Members and Supporters, We are pleased to invite you to the 2015 BDFA Family Networking Weekend and AGM which will be held on: Saturday 17th and Sunday 18th October 2015 from 10.30am – 4.00pm at the Village Hotel -…
The BDFA welcomes the recent announcement by PlasmaTech Biopharmaceuticals, Inc. Professor Kielian and the UNeMed Corporation (the technology transfer and commercialization office (TTO) for the University of Nebraska Medical Center) are to be congratulated for their hard work and vision…