Batten disease is the umbrella name for a group of rare inherited disorders which affect mainly children. It causes a debilitating combination of dementia, epileptic seizures, motor decline, vision loss, profound disability and early death. Currently there is no cure. Instead, families are left to mourn the child that was, and the adult that will never be.

The BDFA’s 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. It 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.

My mum is Head of Scientific Affairs for the BDFA so I know that every penny raised is vital to ensure they can continue to help the families and support ongoing work into the latest treatment strategies that aim to halt progression of the disease and improve quality of life for the children and their families. Batten disease is rare, and it definitely doesn't get the attention that the likes of Cancer and Heart disease get, so your support really does make a difference.

It was my idea to get the charity places, and I've roped my friends into this as well, so please sponsor us to raise money and awareness for a really important cause.

Mum: https://www.justgiving.com/page/joanna-nightingale-4?utm_medium=FR&utm_source=CL

Katy: https://www.justgiving.com/page/katy-derby-1?utm_medium=FR&utm_source=CL