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This October our Family Conference was held at the Village Hotel in Coventry. Families, staff and professionals started arriving on the Friday, meeting up with old friends and making new ones. The AGM on Saturday morning, included a keynote speech from Dr Sara Mole about the groundbreaking and exciting BATCure project. After coffee, everyone had the chance to visit a variety of workshops and sessions, including symptom management, Personal Health Plans, education and fundraising. Our Reflection room was also available for anyone wanting a moment to themselves, and was very well received. The children had their own dedicated programme with plenty of crafts, dancing, DVD’s and face painting. They all loved the visit by the local fire engine, Pets as Therapy dogs and even a mobile farm! All the children were looked after by a dedicated team of carers – as one family said, “I don’t normally hand my child over to just anyone, but they can look after her anytime!”

In the evening we were treated to the premiere of ‘Hey Charlie” – the voice of Batten – and of course the now legendary quiz. “A great opportunity for all the families to get together” was how one person put it.

The highlight of Sunday was a visit for all the children to the Sea Life Centre – exhausting but great fun. Meanwhile, the grown ups were kept up to date with all the research  the BDFA is funding across the UK and beyond, as well as getting an insight into life support training, CLN3 symptom management and the NCL registry. Once the children returned, it was time to visit the Marketplace and find out more from professionals and organisations we work with all year round, before saying our goodbyes. In the words of one of our families, “Everybody has been welcoming and helpful, we feel so privileged to have the support of the BDFA”.  We look forward to seeing everybody again next Autumn.

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All donations help us to provide the best support we can to families affected by Batten Disease.

 

Thank you for your support.