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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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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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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 A PEER BEFRIENDER TO TALK TO, SUPPORT YOU AND TO HELP IMPROVE YOUR EMOTIONAL WELLBEING?

The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…

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Ever Wondered How Peer Befriending Helps Parents?

One parent who previously benefitted from having a Peer Befriender said…  “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…

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