I have taken the difficult decision to step down from my role as CEO at the BDFA.

I wanted to take the opportunity to thank the dedicated staff team and all of the incredible professionals, organisational partners, colleagues and trustees I have met during my time with the charity. It has been a real privilege to work for the incredible families who face Batten disease with such resilience every single day.

Over the past 6 years, (initially as a trustee, then Chair of trustees and the past 3 and a half years as CEO) I am very proud of how the BDFA has grown and thrived. The charity has developed to provide new services to families such as emotional support through The Maypole Project, grown its influence nationally and internationally, grown its staff team, put families back at the heart of the charity with peer befriending and our parent representative roles and bolstered community connection, last year holding its first family conference in 5 years. The BDFA has also played a crucial role for families as a patient organisation, managing the challenging landscape around the NICE process, supporting families to access clinical trials and worked with families on the development of a compassionate use programme at Great Ormond Street Hospital (GOSH).

I wish everybody in the Batten community the best for the future and am grateful for my tenure with this very special organisation.

Amanda