Dear All

This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have two quotes going through my mind as they have been pretty much from my first day. I want to share them with you as they epitomise my time here.

First: ‘It was the best of times, it was the worst of times…’ Charles Dickens. It became clear very swiftly that there was a lot to do so that the BDFA could thrive so it could support the families of children with Batten disease. There were things I needed to improve in a wide range of areas, leading to there being many competing tasks. The most crucial was to stabilise the financial position, which meant that some very tough decisions had to be made. But as the positive results of those decisions began to be seen, and as work on the other areas progressed, it became clear that our community wants the BDFA there to support them and will be there to support us.

This quote also applies to the fight for Brineura, the other thing that has dominated my time here. It is hard to overestimate how this battle impacted on this tiny charity or the achievement it has been to get the agreement from NICE for NHSE to fund it through a Managed Access Agreement. This has only been achievable by the Batten disease community working together, including families whose children have a different form of the disease and families whose children are not able to benefit. Their involvement has been utterly selfless and humbling, and I stand in awe. The battle was a total rollercoaster ride in the middle of a maelstrom. The constant delays, negative decisions, lack of information has been balanced with support from strangers, making our voices heard and finally the right decision. It has been truly the worst of times and the best.

Second: ‘Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever does’… Margaret Mead. The BDFA is small. The Batten disease community is small. Our resources are small. We tackle some large and overwhelming personal and public issues to make things better for families of children with Batten disease as individuals and as a group. The charity was founded by a small group of parents who were thoughtful, committed and, I would add, wanting to change the world for everyone impacted by Batten disease because they knew things had to change. Their determination, along with the families I have spoken to about a number of issues, and the children who have this devastating disease have been my inspiration and motivation. The BDFA has changed the world for those involved with Batten disease, and will continue to do so. I am honoured to have played a small part in that work.

And so. It’s time for me to move on to unknown pastures. I would like to pay tribute to my board of trustees who have shared the best and worst of times with me – thank you for being there. I want to thank my team including those who work for the BDFA from the outside as it were, especially as volunteers – you’ve been fantastic. Thank you to the other organisations that have supported this amazing charity when it’s been most needed, through advice, kindness and financially. A massive thank you to all the fundraisers determined to keep the BDFA thriving for the community – you provide the fuel for our fire. Lastly, my unending gratitude to my families and my children during my time here. You all have been my North Star.

Sam