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Family Support Update

Thank you so much for supporting me and helping me to feel welcomed (and useful!) in my role. I have enjoyed a busy 6 months in post and feel I am developing a stronger understanding of who we support and how BDFA can improve in the delivery of family support in the next year.

Behind the scenes I have been updating our database and asking families what type and frequency of contact would be preferred, this scoping exercise is completed and has been an invaluable process for me, which will help inform the shape and scope of family support as we look to strengthen and grow this service.

I have been working closely with Mimi Petty in Peer Befriending to identify how we can support more group activities and we will be sharing news of new group sessions early in January ‘24.

With Liz Brownnutt I have also looked at my hours of work and feel that I can better support families by working 3 full days each week and my working pattern is 9-5 Tuesday, Wednesday and Thursday. Please be assured that I will pick up all messages and prioritise them at the start of each week.

Over the Christmas period I will be on leave from 20th December, returning on 3rd January 2024.  

Wishing you all a happy, healthy and peaceful Christmas and New Year  

Sarah Kenrick
Family Support and Advocacy Partner

Email sarahkenrick@bdfa-uk.org.uk
Tel/WhatsApp or Text 07498 401492       

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

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