Phil joined the BDFA as Trusts and foundations fundraising officer in December 2024. Phil has worked for several charities including two medical charities in various roles, but his specialty is fundraising. He was a mentor for the Chartered Institute of Fundraising and taught as a guest lecturer in charity and legal work for London Metropolitan University.
He is an expert gardener having won awards and has restored his six-hundred-year-old farm house in France.
Sarah lives in Manchester and is full-time at the BDFA to assist with various aspects of the fundraising team’s work…
Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector…
Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already…
Hi! I am Boris The Bear, I am the official mascot for the BDFA. I live in the BDFA office…
With your support we can help support families living with the devastating diagnosis of Batten disease
Thank you for making a donation to the work of the BDFA.
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease