Beefy's Foundation

BDFA - Batten Disease Family Association

BDFA - Batten Disease Family Association

The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten Disease.  We are based in Hampshire but work with children, young people, families and professionals across the UK. 

We were  in formed in 1998 with the help of SeeAbility and Contact-a-Family, by a small group of parents of children with Batten Disease . We were granted Registered Charity status in 2001 and the work of the charity has continued to go from strength to strength. 

We work collaboratively with our US counterparts, the Batten Disease Support and Research Association to ensure that we  maximise the funds we raise. For each of the projects we fund we receive six monthly reports, the researchers regularly attend our family meetings to present their research and we hold annual lab days with the British scientists to enable families and funders to visit their labs and view their work.  This year we hosted lab days with Professor Cooper at Kings, Dr Sara Mole at UCL and Dr Claire Russell at the Royal Veterinary College.

In addition to our research funding we have a very specific aim of supporting families living with Batten Disease.  We do this in the following ways:

Living with a rare disease like Batten's is a very isolating experience and families hugely value the support that they are able to give each other. We fund families' attendance and accommodation as many are on a very low income due to their caring responsibilities. (£8k)

We publish a twice yearly newsletter giving details of our work and theSpring Issue can be found Here

In 2012-13 we funded a number of research projects.Click Here to see show your broad the range of work we have been involved in. 

See more about us here

BDFA - Batten Disease Family Association