Project information

Batten Disease Family Support

Our vision is that every family with a child affected by Batten Disease is supported on their journey with Batten Disease. The Family Support Project will provide this support by offering the UK's only Batten Disease helpline, specialist training days as well as bringing affected families together.

January 2019 - December 2019

Charity information: Batten Disease Family Association

Batten Disease Family Association logo
  • Need


    Batten Disease is a rare disease with no therapies and no cure. The families of children affected by Batten Disease live throughout the UK sharing the same trauma of diagnosis, the fight for information, the battles to get equipment, funding, school placements and care, whilst having the need to maintain a normal family life. This sense of isolation is keenly felt as other affected families may live miles away and local Batten Disease knowledge may be very limited.


    The Family Support Project will support affected families through a range of means so that families can live their best lives with help from people who understand. Specialist Batten Disease training days equip families, and professionals working with affected children, with the tools to better care for a child so that they can reach their maximum potential in the limited time that they have. The only Batten Disease helpline in the UK gives support to families when they need it most.

  • Aims

    Aim 1

    To better support families affected by Batten Disease and supporting their associated professionals.


    » To hold one family weekend to bring together families affected by Batten Disease from across the UK.
    » To hold training days each year to further the understanding of Batten Disease and caring for a child affected by Batten Disease.
    » To provide a specialist helpline to support all those affected by Batten Disease.
    » To provide up to date information about Batten Disease to families affected through the BDFA newsletter and e-bulletins.

    What success will look like

    Success will be receiving increased contact with families and their associated professionals through increased attendence at our events and the number of helpline calls received.

  • Impact


    This project will enable families to feel less isolated in caring for their child and young adult affected by Batten Disease. We will be able to demonstrate the success of our work by monitoring the number of affected families and professionals who are in contact with the BDFA to seek specialist support and information.


    There is a risk that staff may change threatening the close links we have established with affected families and their professionals. To minimise this risk we use a good database to ensure that information is securely, and appropriately maintained, so that this work can continue seamlessly and effectively.


    We will be able to send regular reports to show the progress being made in meeting our project aim. This report will include case studies of our work as well as any necessary changes that have been made to the project plan.

  • Budget

    Budget - Project Cost: £35,500

    Loading graph....
      Amount Heading Description
      £31,000 Staff Costs Family Support Officer
      £2,000 Office Cost of office for Family Support Officer
      £500 Staff Training and Travel Family Support Officer specialist training costs
      £2,000 Travel expenses Family Support Officer travel
  • Background


    The BDFA works throughout the UK helping to support all families affected by Batten Disease.


    Batten Disease is an inherited disease and it does not affect any particular social or economic group but it is devastating for any family living anywhere in any circumstance. Batten Disease causes an apparently healthy child to develop epilepsy, lose the ability to walk, talk, eat and see, as well as developing dementia, before dying between the ages of 5 - 30 depending on the type of Batten Disease inherited. There is no cure. All families, with their associated professionals will benefit.

  • Why Us?

    Why Us?

    The BDFA is the only charity dedicated to Batten Disease in the UK. We were set up in 1998 by a group of parents who felt that there should be a specialist organisation in the UK and the BDFA gained charity status in 2001. The BDFA works closely with specialist medical professionals working with children and young adults affected by Batten Disease. The organisation also works closely with scientists who are undertaking Batten Disease research.

    Read more about the Charity running this project.


    Harriet Lunnemann

    Harriet has been supporting families for over 4 years. She has extensive knowledge of Batten Disease and is a qualified social worker.

    Samantha Barber

    Samantha is the BDFA's CEO and will be supporting Harriet to ensure that she is able to effectively support families affected by Batten Disease.

It is a comfort to know that there are people who understand