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Peer Befriender Advert 2022

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 a peer befriender?’

A Peer Befriender is a specially trained parent volunteer from the BDFA community who may be on their own journey with their child with Batten disease, or they may be a bereaved parent. Peer Befrienders offer emotional support to parents whose child/children have recently been diagnosed with Batten disease, or are at a point of change and need someone to talk to who understands something of what they’re going through. This service aims to reduce isolation, have a positive impact on your emotional wellbeing and increase your confidence.

 ‘“We will listen, we will talk, we will support you and we hope that by doing so, we can help you to improve your emotional well-being. Most importantly we understand, as parents of children with Batten disease ourselves. When you feel you need to talk, we will be here.”’

Parent Peer Befriender.

Peer Befrienders aren’t counsellors – they are volunteer parents who have undergone Peer Befriending training and bring their own experience of supporting their child with Batten disease. Training includes understanding the needs of parents at different stages in the Batten journey, boundaries, active listening and safeguarding. Your Peer Befriender will speak to you at regular agreed times (over zoom or the telephone) to help provide you with emotional support.

‘“I wish I had had this service available when my child was diagnosed. It would have helped me better face the challenges that lay ahead. There is nothing quite like speaking to another parent who actually understands.”’

 -Parent of a child with Batten Disease.

Valerie Trayner, one of the BDFA’s parent Peer Befrienders, with her family.

If you are interested in discussing being matched with a Peer Befriender then please contact Mimi, Peer Befriending Coordinator at mimipetty@bdfa-uk.org.uk or call her on 077877 55278

We look forward to hearing from you!

The BDFA are very thankful to the National Lottery Community Awards and to the CAF Resilience Grant for funding our Peer Befriending Service

Donate to the BDFA

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

Thank you for making a donation to the work of the BDFA.

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