We learned in the first few years of our family journey just how hard it is to face the challenges of dealing with the disease and needs of the children. While there is support in the Batten Family community and a small number of charitable organisations that provide help, there are limitations and gaps.

In April 2019 we registered Batten Fighters Forever as a charity and in the first 2 years have raised around £25,000 in funds that has enabled grant awards to help families with equipment and services they can’t get support elsewhere.

Here’s a short video reflecting on the first 2 years of BFF as a charity