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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 new team of parent volunteers…could you be one of them?

‘What is a Peer Befriender?’

A Peer Befriender is a trained volunteer 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, are at a point of change or facing a particular challenge. Peer Befriending training can also be very encouraging and have a positive impact for the Peer Befrienders, as well as to the parents they support.

We believe the Peer Befriending project will be hugely beneficial to our Battens Community. You all have so much experience and support to share with one another and we’re proud to be able to help deliver this in a structured and supervised way.

We would also like to hear from Dads and Grandparents who will be able to share their own unique experience as Peer Befrienders. This project will run across the UK and we’d like it to benefit as many families in our community as possible.

Full training will be provided as well as monthly supervision (all taking place on Zoom).

Training covers active listening, the parent journey, boundaries and safeguarding. The training will be co-delivered by experienced Peer Befriending Trainer, Dr Jane Peek (who is also the parent of a child with additional needs) and Amanda Mortensen, CEO.

Training over 6 sessions will take place on the following dates…

-Wednesday 27th April

-Wednesday 4th May

-Wednesday 11th May

-Wednesday 18th May

-Wednesday 25th May

-Wednesday 8th June

Training will be run as a group session on Zoom with Peer Befriending Coordinator Mimi Petty present and will run from 9:30am – midday (with a one hour lunch break from 12-1pm) followed by an afternoon session of 1-2pm. If you can’t attend this training course we will be running a further course in January 2023.

If you are interested in applying to be a Peer Befriender for the BDFA then please contact Mimi Petty, Peer Befriending Coordinator at mimipetty@bdfa-uk.org.uk or call her on 077877 55278

You can also join us on our ‘Peer Befriending Information’ session on Thursday 31st March at 7:30pm on Zoom. Please email Mimi if you would like to attend.

We look forward to hearing from you!

We will be sharing more details about how to access this service (and being matched with a befriender) in May…

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