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BDFA News

Dear Families,

It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week.

We are going to miss Sian as a person and a professional. Sian helped the BDFA take family support service to another level and was admired and respected by their colleagues and most importantly our families. We wish Sian well in her next adventure.

We are pleased to announce that Sarah Kenrick has returned to the BDFA in a consulting role and will be providing family support for the foreseeable future. Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as a Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long-term residential support for young people and adults with complex disabilities, rare diseases and, in particular, CLN3 Batten Disease. Sarah has been a long-standing partner of the BDFA and is a well-respected member of the wider Batten Community.

Initially, Sarah will be working 20 hours per week and can be reached at sarahkenrick@bdfa-uk.org.uk or 07498 401492.

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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.

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£5 a month
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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