General: 07354 486586   |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
NEXT DAD’S CHAT, Wednesday 28th February At 8pm

A chance to come together on Zoom with other dads from the BDFA community and have a chat.Led by trained Peer Befriender Andrew Dawkins and James Yarrow. If you are interested in joining the session or to find out more,…

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Join Us For Parent Led Zoom Meeting, Understanding Blended Diets For Children With A Gastrostomy

Join us for this parent led session to give other parents an insight to a blended diet and a family’s personal journey, enabling you to explore and share your experiences around the topic. Hosted by Holli Longley and Sarah Kenrick…

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New CLN Group Meetings                                Facilitated By Sarah Kenrick And Mimi Petty

Dear Parent’s, I have enjoyed speaking to most of you over the past 7 months and many of you have said how you would like to have informal meetings specific to your child’s CLN diagnosis, so Mimi Petty - Peer…

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Next Quarterly Town Hall Family Meeting

Next quarterly Town Hall Meeting Dear Families, The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 4.30pm on Friday 24th November. The purpose of the meeting is to provide families with…

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TRAINING FOR PROFESSIONALS SESSIONS, Oct 2023

Learning and development news TRAINING FOR PROFESSIONALS SESSIONS, Oct 2023 The BDFA is pleased to offer training to, educators and paid carers, over the next three dates. This is for professionals who work with children/young people and adults who have…

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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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DATE FOR NEXT DADS CHAT

Thursday 23rd March. 8pm The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer Befrienders Andrew Dawkins and James Yarrow (both amazing Batten parents)…

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Would YOU Like To Be A PEER BEFRIENDER?

The BDFA are proud to launch a new Peer Befriending service to help support families in a way that only other parents of children with Batten Disease will be able to do. We’re so excited to be now seeking our…

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Rare Disease Day 28th Feb 2022

Join the Global Chain of Lights! Here is how.... Show your support for #RareDiseaseDay by lighting up your home, office or school on 28 February! By coming together to #LightUpForRare we can raise awareness, show solidarity, and be part of…

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The BDFA Welcomes Sarah Kenrick To The Team As Our Batten Behaviour, Adults And Transitions Specialist.

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 Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long…

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