Violet is biking for battens!

Violet will be doing a route around our village which equates to a mile everyday, to raise money for Battens. Mum will be joining her, too! We’ll be doing this from the 3rd-9th June!

Violet loves to hear stories or Mummy looking after lovely people living with battens, most of those lovely people who are no longer here. We’re going to be wearing bright orange and letting everyone know in our village that Battens is something we should all know about!

June 9th is Batten Disease Awareness Day and we’re hoping to spread awareness whilst raising vital funds to go towards the work of the Batten Disease Family Association (BDFA).

The BDFA supports families affected by Batten disease, a rare and terminal neurodegenerative condition which affects children and young adults. 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.