We are delighted to announce that Sarah Kenrick has formally joined the BDFA team as our ‘Head of Support and Advocacy’ from 1st February. Sarah has been providing support and advocacy for families over the last 18 months as a contracted consultant for the BDFA and we are thrilled that she has now officially stepped into the role becoming a permanent member of the team. Sarah brings a wealth of knowledge and experience in supporting families affected by Batten disease to the role, and her formal appointment as Head of Support and Advocacy therefore provides a solid and secure future for the service as it continues to grow and develop under her guidance.
Message from Sarah:
I am so excited to be given the opportunity to shape and develop the support and advocacy service within BDFA. I feel privileged to have seen the BDFA from many angles over the course of it’s history, from Trustee, to volunteer, the contracted consultancy role, and now as Head of such an important arm of the BDFA. I am also fortunate to Have Mimi Petty our Peer Befriender to work with in this team.
Over the past 5 years I have seen the landscape of social care change exponentially across the UK, giving me a much clearer understanding of the challenges families face, from adaptations to securing adequate direct payments, getting appropriate support from Local Authorities to transitioning through services and so much more.
Over the past few months, I have been working to develop the quality of information in our Family Folders (the Orange folders), for the website, and with members of the Batten community, designing a programme of interactive sessions to Parents and carers.
We have also worked to secure funding for our new bereavement service and in the coming weeks we will give more detail to all of these initiatives. I am fortunate that since 2019 I was able to work closely with my predecessors and understand that making contact with parents regularly is important, with more hours and Mimi’s support, I hope to achieve that.
