Introducing Batten Disease Family Association CIO
Family Away Day Funding Request
We would like to introduce our charity, the Batten Disease Family Association CIO (BDFA) based in Shipley, West Yorkshire. Batten disease is a life-ending, neurodegenerative condition, predominantly affecting young children and has no cure. It progresses rapidly and leads to blindness, loss of dexterity and mobility, epilepsy, childhood dementia and ultimately, death; life expectancy is short. We work closely with our one hundred plus families to provide the most impactful support, including fifteen families in Yorkshire. Though a small team we can do amazing things. Our advocacy on behalf of families secured vital care packages of over a million pounds in 2024.
We are hosting a special family day for parents and children at Temple Newsam near Leeds in September. Every family that we support will lose their child. The rapid onset of Batten disease puts huge strains on parents, who often have to give up work to care for their affected children. Many face extreme isolation, often with no family living nearby and a limited support network. A family day enables parents to come together and bond, sharing their experiences and helping each other deal with the demands of full-time care and anticipatory grief. It gives the children and their siblings an opportunity to make new friends and establish life-long relationships which can be sustained online.
Being a small charity, it is not easy for us to fully fund such events, and many donor charitable trusts do not support such activities. We would therefore humbly ask your company to consider making a modest donation towards our £6,000 budget to help us facilitate our Yorkshire Family Day. Our budget includes costs to cover venue hire, catering, marquee/gazebo hire, sensory entertainment for disabled children, face painting artist and a contribution towards family travel and accommodation.
Our families have a long and difficult road ahead to promote Batten disease awareness and its impact on them. Like many life-ending condition charities, we need improved diagnostic pathways, the ability to fund more research and raise awareness of the catastrophic impact of the condition. We are the only patient organisation in the UK for families affected by Batten disease and family led, with parents on our trustee board. This event will be invaluable to our families, giving them the opportunity to spend quality time with those who understand their situation the best, other families. We cannot prevent their child’s inevitable decline, but we can at least help to give them a quality of life they deserve.
There are more extensive details on our website. www.bdfa-uk.org.uk
The BDFA’s mission is to enable children and young 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.
Providing Practical Support for Families
Our team advocates for families across health, education and social care, ensuring they have the best possible support. We work with the Rainbow Trust, the Maypole Project, Family Fund, schools, GPs and children’s hospices and help secure care packages, welfare benefits and medical and educational support they need.
Anticipatory Grief and Bereavement
Our Family Support Team work with families anticipating grief, prior to their child’s death. After, we continue to support parents, helping them adjust to a very different life.
Wellbeing and Mental Health
Peer Befriending Service – we train and support parents who volunteer their time to support other parents with newly diagnosed children. Their experiences are invaluable in helping other families adjust to the devasting impact of Batten disease. A win-win, as the volunteers are themselves gaining valuable skills whilst supporting others in a structured way that supports their own mental health.
CLN Chat Groups – we facilitate both a mum’s and a dad’s chat group.
Family Well-Being/Counselling Service – Parents, affected children, siblings and relatives, receive specialist counselling. Some children receive art based therapies to enable them to improve school attendance and academic performance.
Impact Data – Value of our Work
The BDFA’s Family Support Service currently supports 105 families and 118 children
- Families receiving advocacy support 33
- Care packages secured or reinstated 11
- Value of care packages secured through advocacy £1,152,056
- PIP packages secured or successfully appealed for families 13
- Value of welfare benefits secured and successfully appealed £50,057
- Total hours of advocacy 330
- Families receiving family grant payments 19 x £500.00 £9,500
- Families receiving active support 118
- Training sessions provided for local schools 17
- Teachers and Support Workers attending training 650
- Advocacy on behalf of families with care professionals 119
- Families receiving peer befriending support 19