BOOK NOW Do you want a different challenge? Would you like to join us and see beautiful Snowdonia by moonlight and raise money for the BDFA at the same time? 9th-10th June 2018 Snowdonia National Park in North Wales is…
On a beautiful June evening we were lucky enough to host our very first Starlight Ball. It happened to be held on awareness day. We were thrilled to see so many people support the BDFA and also have a fantastic time…
Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also volunteers with families living with disability in Uganda. Now she…
We are delighted to announce we will be holding a BDFA Starlight Ball on awareness day – Friday 9th June Join us for Dinner, Drinks and Tunes! All proceeds go to The BDFA Single tickets £75 or a table of 10…
Rare Disease Day takes place on the last day of February each year. This year its the 28th February 2017 The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases…
After our amazing Family Conference last weekend. We have posted the photos taken over the weekend on out facebook page for you to see and share! We will have our video up very soon!
On Monday evening, 5 year old Ollie Carroll and his family attended the WellChild Awards Ceremony in London to receive his award for Most Inspirational Child (aged 4-6) from HRH Prince Harry. Brave Ollie, who has CLN2 (Late Infantile Batten disease),…
During the month of December Virtual Warrior are raising money for The Batten Disease Family Association (BDFA) to commemorate the life of a very special little girl named Amber, who sadly passed away in February 2016. All you have to do…
We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness and fundraising. For many parents, life’s simplest joys are found…
Francis Mills trained vigorously for the challenge, overcoming the loss of his specialist bike after it was snatched from his workplace in June. Left without his £550 white Trek bike, the fundraiser saw supporters far and wide rush to his…