The lovely Harrison family whose son James has CLN1 (Infantile Batten disease) will be raising awareness on This Morning on Monday 5th October. Please watch and let people know, a great platform to raise awareness.
We already knew she was tough, running over 150km of muddy obstacle races this year raising money for the BDFA, and now it's official. Jenny Shackleton has been chosen as one of ITV's, Good Morning Britain's 'Tough Mums'. Watch this Thursday…
The Cycle to the Circle team have made it! You can read about the amazing journey and why they have done it here - Words form the team on completion - Worth it for 'the cause'. A big thank you to BDFA,…
Join Sir Ian Botham and special guests for his big birthday fundraiser at the Wormsley Estate, where cricket, fine food and incredible live music combine for the perfect family day out! Friends from the past and present such as cricketing…
We are now back in the office after a group of 80 of us spent the weekend at Bourton-on-the-Water in the Cotswolds for the Batten Disease Family Association 10th anniversary walk. We had sunshine and showers to make it a…
Dear Members and Supporters, We are pleased to invite you to the 2015 BDFA Family Networking Weekend and AGM which will be held on: Saturday 17th and Sunday 18th October 2015 from 10.30am – 4.00pm at the Village Hotel -…
We have an amazing limited edition Painting from Nikky Corker up for grabs. We are running an Online Raffle draw, so you can buy your tickets online, and you will be emailed your ticket and number. It's a one off painting…
On June 5th we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…
We are always humbled by the incredible efforts that our fundraisers go to, to raise awareness and vital funds for our work. Jenny Shackleton is the aunt of beautiful Amber Jutla, and is not just running races but completing the…
Congratulations to our patron Andrew Strauss on being appointed Director of Cricket at the England and Wales Cricket Board, the top job in English cricket. We would like to thank Andrew for his continued support of the BDFA, and his…