"The BDFA has been the difference at times from feeling completely alone to knowing that someone else is there that understands. In the hours after our son's diagnosis especially, they filled our huge numb void with a lifeline of support and gave us some hope".
Simon Sewart, dad to Max, 13, who has late infantile Batten disease
The Batten Disease Family Association CIO (BDFA) is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that causes profound disability in children. The BDFA was set up in 1998 by a group of parents of children with Batten disease, who were determined that no family should walk this path alone. Over the years, the BDFA has been providing vital emotional and practical support to affected families.
There are 13 types of Batten disease, and it is a life-changing and devastating diagnosis. The disease progresses rapidly and children develop complex epilepsy, eventually lose their sight, the ability to walk and talk and ultimately become completely dependent on their families and carers.
Our mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone. The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure. We advocate for families across education, health, and social care, ensuring they have access to the support they need.
How does the BDFA work directly with families?
We support health
We look after families holistically, providing emotional and practical support from diagnosis to bereavement and beyond. We commission a family well-being service that specialises in supporting families of children with complex needs and life-limiting conditions. We play a crucial role in influencing policy makers and lobbying government around access to treatments, shaping policy and supporting research into all forms of Batten disease. Our Head of Scientific Affairs creates links to other groups and scientists to keep up to date with the latest research, clinical trials and treatments, fully understanding the scientific landscape so that our families are kept well informed.
We support wealth
We support families to access the benefits they are entitled to, we signpost families to other funding sources and we run a family grant scheme which prioritises families who are on a low income, those with a newly diagnosed child and those who have a child at end of life.
We support integration in community and the wider rare disease community
Families are effectively grieving from the day of diagnosis, and many feel isolated, coping with ‘anticipatory grief’. We help families maximise their child’s quality of life by supporting them to access the best education and leisure opportunities and upskilling the different education and therapy professionals looking after them. We run a Peer Befriending Service which offers emotional support to families from those who understand the journey best, other parents, who walk alongside them, building resilience and reducing isolation. This service has grown to include a dad’s and a mum’s online support group, which meet monthly, and regular CLN specific group chats facilitated by our Family Support Partner and Peer Befriending Coordinator.
We have a wider impact on the rare disease sector working with six other national organisations to support families with rare diseases and influence work around access to treatments and early diagnosis.
