General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  

The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten disease to maximise their quality of life and secure the care and support they need.

The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively raising awareness.

A truly parent-led organisation, we were set up over 20 years ago by a group of parents and we have been a charity for 18 years. We have a small team comprising a CEO, two part-time Family Support Officers and a part-time Administrator.

As the patient organisation for those affected by Batten disease, we have worked closely with families to navigate very complex process around the approval of the first treatment for Batten disease. Brineura, a treatment for children with late-infantile Batten disease (CLN2), was approved for use on the NHS just last month. This has been a pivotal time and very emotional and challenging We know that other therapies for different variants of Batten disease will soon be at trial stage and we are here to work with families through these exciting but demanding times.

We have been through a great deal of change and have faced financial challenges. We have cut our costs we are now working to rebuild and prepare for the new challenges that are facing us. As a result, we are now keen to appoint new Trustees to work with us to take the BDFA forward.

We are looking for three new trustees to join our board and specifically a trustee with an interest in fundraising and a treasurer who has a financial background. We are particularly keen to hear from people who have a personal connection to Batten disease, whether that be as a parent, grandparent, sibling, wider family member or close family friend.

We are seeking people to join our Board who are able to commit the time and energy to help our charity pursue its next phase of development.

The Charity has a small but highly experienced Trustee Board and you will play a vital role in governance and shaping the strategic direction of the Charity. The Board meets in London 6 times a year (plus one strategic planning day). We also hold an annual AGM/Conference for families, once a year in November and all Trustees are expected to attend. We are keen to confirm our new trustees at our next AGM, in November.

We recognise the enormous benefits of a diverse Trustee Board and encourage applications from a range of backgrounds. This is a voluntary position but reasonable out-of-pocket travel expenses will be reimbursed.

If you would like an informal conversation with our Chief Executive, Samantha Barber, or our Chair of Trustees, Amanda Mortensen (which we highly encourage) please make contact. Sam is available at and Amanda at The deadline for expressing an interest is 23 Oct 2019 and interviews for the trustee positions will take place week beginning 4 Nov 2019. Please send a statement outlining your interest in the role and how your skills and experience make you the person to join the BDFA Trustee Board.

Appointments are subject to prospective trustees signing a Declaration of Good Character and providing a satisfactory DBS check.

Our latest Annual Report & Accounts can be found here.

No agencies please.

More about Batten disease

Batten disease (also known as Neuronal Ceroid Lipofuscinoses (NCLs) describes several different genetic life-limiting neurodegenerative diseases that share similar features. Although the disease was initially recognised in 1903 by Dr Frederik Batten, it wasn’t until 1995 that the first genes causing NCL were identified. Since then over 400 mutations in 13 different genes have been described that cause the various forms of NCL disease.


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