Every emotion resonated at our family conference in Stratford Upon Avon last weekend, the first in five years. The joy of reunion, the power of connection, the comfort of camaraderie… it was such a special weekend with tears and laughter in equal measure.
30 families including 28 children, young people and adults with Batten disease and 22 siblings joined us for the weekend. The feedback from you has been really positive and we are taking on board all of your “even better if” ideas to make the conference even better next time.
We want to publicly thank our incredible team. Our talented admin lead Lisa Forsyth has been an absolute star and oversaw the organisation of the entire event. Our Head of Family Support and Advocacy Sian Fisher thoroughly enjoyed the most important job of the day- overseeing the activities and the staff for all of the children, young people and adults with Batten disease, supported by a fantastic team from Newcross Healthcare and our wonderful Head of Fundraising Liz Brownnutt. Our new scientific officer Jo Nightingale was just as adept at leading the post-dinner quiz as explaining how clinical trials work. The Maypole Project ran a brilliant siblings programme as well as offering therapeutic support to bereaved families. Our BAT specialist Sarah Kenrick ran several sessions alongside Dr Ruth Williams on dementia, sleep and behaviour to name a few. Clinical nurse specialists from Great Ormond Street Hospital and Children’s Charity were on hand for advice and a team of Genetic counsellors joined us from Birmingham Childrens Hospital and Charity Our Peer Befriending Coordinator Mimi Petty supported our peer befriending project, overseeing a lovely “certificate giving” to our new befrienders after dinner, as well as being there as a bereaved mother.
We also had some amazing volunteers. Reverend Lucy Roose, who many of you know as a former BDFA staff member, led a beautiful remembrance service. Barbara Cole returned from retirement to provide education advice which was very much appreciated. Artist (and puppeteer) Kim Phillips (Lisa’s dad) was a favourite around the art table. Pauline Docherty, our longstanding trustee, was there supporting us as ever, manning the front desk.
Thank you to Professor Sara Mole, Professor Paul Gissen, Mr Rob Henderson, Dr Emyr Lloyd-Evans and the many scientists and researchers from around the UK who joined us to run a lively and insightful scientific and research programme. The scientists were able to hold a meeting, invaluable for future ideas and connections.
Thank you to the fabulous SpOt drama, who ran sensory theatre performances throughout the day, Chloe’s Mobile Farm, Bubbly Heaven and Gamechanger MGV gaming van who visibly cheered many of the siblings when they arrived on Saturday evening. Sense – connecting sight, sound and life joined us for the whole weekend and their team were really hands on, providing interactive activities for the children. Guide Dogs UK joined us with a working “buddy dog” (a highlight for many) and The Amber Trust ran specialist music sessions. A special thank you to Liz’s daughter, 16-year-old Poppy Brownnutt who performed the song she wrote inspired by her cousins Ellie Mae and Caleb, who passed away from CLN2 Batten disease. That was a very emotional moment for all.
Every family we said goodbye to said “can’t wait for next year” so the fundraising and planning starts now! Here are the first highlights from our photographer, amazing Helen Hoffman Photography, many more to come and any photos we have of you and your family will, of course, be shared with you.
We leave you with a quote from one of our families, the Clarke family: “The reality of the disease stares at us like never before, but for 30 hours, we stared back unafraid, because we stood together. Together as one. Together as family.”
Amanda, CEO, and Zlatko, Chair of Trustees