As the 1st of March arrives, it is time to say goodbye and good luck to Andrea as she leaves the BDFA and starts her new job. The Board of Trustees and the Staff thank Andrea for her hard work, passion and commitment over the past 7 years.

We are proud to say that during Andrea’s tenure the BDFA has grown. We now have a support and advocacy function and a scientific officer. We have recruited a Clinical Nurse Specialist and awareness of the disease and the challenges faced by families is greater than it has ever been, so again, thank you, Andrea!

We have to move on and we are pleased to announce that we have now appointed a new CEO and will make a further announcement as soon as we are able to confirm the start date. In the meantime, the Team is working as hard as ever to continue to support you. As you will have seen from our website and Facebook, we are currently heavily involved in challenging the NICE decision to refuse CLN2 (Late Infantile Batten Disease) children access to Cerliponase Alpha.

Please be patient with us – we are the only charity in the UK devoted to supporting the children and young people plus their families affected by this devastating disease, but we are a small charity with limited resources so we apologise if it takes us a little longer than usual to get back to you.