What do we do? 

• provide a helpline for carers and professionals

• maintain a website

• put affected families in touch with other affected families

• signpost families and professionals to other supportive professionals

• provide educational conferences and supportive resources

• provide updates on research developments

• increase awareness of Batten Disease amongst the public, medical and research world. 

What research do we support?

• understanding more about the disease process so that better support can be given to those affected

• identifying the genes and mutations that cause the disease

• understanding the functions of the genes and the effect on their activities of the different mutations

• developing model systems for understanding the biology of the disease and what changes are significant

• understanding exactly how the brain is affected as a first step towards one day slowing Batten Disease or stopping it

• the development of better diagnostic tests

• the development of potential therapies or new methods of treatment