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Batten Befrienders With Lotto Logo

We have big news, long post alert, but so worth it! It’s national befriending week this week and what better time to announce that we have secured funding for a new peer befriending project, sitting at the heart of the Batten community.

Befriending provides emotional support for parents, delivered by a team of trained and skilled volunteer befrienders who are parents themselves. Peer befriending can be invaluable around the time of diagnosis, at transition points (transitioning to adulthood or moving to secondary school, for example) or the onset or worsening of symptoms of the disease. When families receive a diagnosis of Batten disease they will often ask to be put in touch with another family on a similar journey. Peer support differs from other kinds of emotional support, it is unique as befrienders bring their lived experience to the role and are able to understand a parent’s situation in a way nobody else can.

During a BDFA parents’ focus group meeting, parents told us that families want to see that there is hope in the midst of a Batten diagnosis. They want to be connected with someone who has ‘walked in their shoes’ and learn from their knowledge and experiences.Peer befriending can be defined as: “A relationship between two or more individuals which is initiated, supported and monitored by an agency that has defined one or more parties as likely to benefit. Ideally the relationship is non-judgemental, mutual, purposeful, and there is a commitment over time.”

Gail, mum to Nicole and Jessica who have CLN2, and Sarah, who is mum to Finley and Harrison, who have CLN3 have supported each other through the ups and downs of Batten disease.

Peer befriending is not only hugely impactful for those who receive support via befriending, it is also very positive for parents who train up as befrienders. This new service complements our core support team and bolsters our capacity to provide emotional support in synergy with our family wellbeing service, provided by The Maypole Project.

We are pleased to announce two opportunities for parents:

🔸BDFA team role opportunity: Peer Befriending Coordinator🔸

14 hours a week (worked flexibly)Home based anywhere in the UK with some travel to the London office (costs covered by the BDFA)£26,000 PA pro rata (actual pay £10,400)

We are looking for a parent with lived experience of Batten disease to lead and grow this project. This role will not be advertised elsewhere. Experience of supporting others, managing volunteers and managing projects is an advantage but not essential as full training and support will be provided. If you are interested in this opportunity and would like to see the job description please email our Chief Executive Amanda on amandamortensen@bdfa-uk.org.uk or call on 07876682589

🔸BDFA volunteer opportunity: Become a Batten Peer Befriender 🔸

We will be announcing more about this in the next few weeks. This will be an eight week online training course (school hours) to become a peer befriender. New befrienders take part in intensive training which runs over 8 weeks and includes listening skills, boundaries, safeguarding and the parent journey. The training will start in January 2022 and there will be another opportunity to join a training course towards the end of 2022.We welcome applications from across the community, including dads and grandparents. We particularly welcome applications from the BAME community. Once you take up this valuable volunteer role with us, supervision and support will be given as you start your journey as a befriender. We completely understand the variables around parenting a child, young person or adult with Batten disease and there is not a fixed time commitment.

Please email our Chief Executive Amanda on amandamortensen@bdfa-uk.org.uk or call 07876682589 if you would like to indicate an interest at this early stage.

We are extremely grateful to our funders, including the National Lottery Community Fund for enabling us to begin this exciting new project.

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