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Bereaved Parents Club Podcast, Episode #6 Giving Back: Batten Disease And Befriending

Lynsey Dent, one of our BDFA Peer Befrienders, speaks on this podcast about what it’s like to be a bereaved parent, after she lost her children Ellie Mae and Caleb to Batten disease. She also speaks about how our BDFA…

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BDFA Peer Befriending Team Training Weekend

BDFA Peer Befriending Team had a weekend away together in London in April, organised by Peer Befriending Coordinator Mimi Petty. The team met together in person to receive training and also to spend time together, offering one another support. ‘Thank…

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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 Mums Chat, Wednesday 17th Jan, 8pm

Join us for the next Mums chat! WEDNESDAY 17th JAN, 8pm on Zoom This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a relaxed setting and get…

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🚹 NEXT DAD’S CHAT 🚹

Thursday 23rd November 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…

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Introducing BDFA Mum’s Chat

The BDFA are hosting a MUM’S CHAT (for mum's of children and young people of all CLN variants) Tuesday 22nd August 8pm This will be held once a month on Zoom and is a chance for mums from the BDFA…

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Would You Like The Support Of A Trained BDFA Peer Befriender?

All our Peer Befrienders are parents with lived experience of Batten disease. They have an understanding of the challenges you may face and know how isolating it can be feel to live with a Battens diagnosis.They are here and ready…

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Join Our Friendly Dads Chat Session On Tuesday 2nd May At 8pm On Zoom

Join our friendly Dads chat session on Tuesday 2nd May at 8pm on zoom. 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…

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