Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure. Children are born healthy loosing their vision, suffering severe seizures that are difficult to control; dementia, jerks of limbs; difficulties sleeping; the decline of speech, language and swallowing skills; and a deterioration of fine and gross motor skills that result in the loss of mobility. Ultimately the child or young person will become totally dependent on families and carers for all of their needs. Other symptoms that are commonly seen are hallucinations, memory loss and challenging behaviours. Death is inevitable and, depending on the age of onset and specific genetic diagnosis, may occur anywhere between early childhood and young adulthood. Currently there is no cure for any form of the disease and therefore specialist symptom management and therapy is essential to assist in maintaining a good quality of life for children and their families. Holistic support for parents, siblings and wider family members is extremely important throughout their journey.
If you'd like to run, swim, bake (or do anything else to raise some money), click the button below to get started. It's quick and easy to register and by doing so here at Wonderful.org, you can be sure that every penny raised will reach Batten Disease Family Association.
We recognise the selfless commitment made by fundraisers who train for months to run marathons, face their fears by jumping out of aeroplanes or open their homes to the community for charity bakes and coffee mornings. We believe the charities they support should receive EVERY PENNY from their fundraising efforts.
We also believe that Gift Aid (a scheme enabling charities to reclaim tax on donations made by UK taxpayers) should be directed IN FULL to the charities. This is why the Wonderful Organisation does not generate profit (or even cover costs) by deducting money from fundraisers' sponsors or Gift Aid contributions.
We are a non-profit organisation funded entirely by like-minded, philanthropic businesses. That's what makes us wonderful!