Dear all, As we approach the end of 2024, I would like to express our sincere thanks to all the families in our community for their continued support this year. It has been a challenging year in some respects, but we have much to celebrate in terms of our achievements, as we continue with our work as the only patient organisation in the UK for families affected by Batten disease. I would like to share just a few of those achievements with you. We have continued to support and advocate for families across the UK with 117 children and adults with Batten disease. Over the past year we have undertaken 95 1hr+ advocacy sessions, across a wide range of education, health and social care issues.  We have also provided a variety of generic and bespoke training for schools and associated professionals. Our peer befriending service continues to develop, we have been thrilled to provide training for a further three parents and we now have a team of 11 volunteer befrienders. The Dad’s chat and Mum’s chat group for all CLN subtypes are developing well. We have continued to provide opportunities for families to meet in CLN specific group chats facilitated by Sarah and Mimi and this year we also began family-led cooking sessions in the school holidays, thinking creatively about how we can open up further opportunities to bring families together.

Our Family Wellbeing service, which we commission the Maypole Project to deliver continues to support around one third of the families in our community, providing  crucial therapeutic and counselling support. We successfully completed our submission for the re-evaluation of Brineura treatment for patients with CLN2 and our patient experts attended two NICE Committee meetings as the representative voice for the community. Although we are dismayed that we do not yet have a positive decision for Brineura, we are working hard to build political support, and we have launched a social media campaign to call for a positive agreement for Brineura to be reached as a matter of urgency. As the six-month extension to the Managed Access Agreement continues into 2025, we will not stop in our persistence until permanent access  to Brineura for all patients with CLN2 is achieved. We have strengthened our relationships with clinicians, scientists, pharmaceutical companies and patient advocacy groups, keeping abreast of all the latest research developments. Our research study examining the diagnostic odyssey of Batten disease, which was led by our Scientific Committee and in collaboration with the Health Policy Partnership, has been submitted to a scientific journal. We plan to launch the policy report formally in the coming months and this will be a valuable tool with which to advocate and influence policy makers for improved patient diagnostic and care pathways, leading to earlier diagnosis and better care management for children and adults affected by Batten disease. We launched our new strategy and revised mission statement this year and we had the opportunity to present it to families at a Town Hall meeting. Our strategy focuses on advocacy with four strategic imperatives; elevating standards of care, raising awareness, developing research and strengthening our governance. As part of our raising awareness and education strategic aims we plan to begin an online science and research education programme for families and professionals starting in January. The BDFA successfully completed the transition to a Charitable Incorporated Organisation (CIO) in September, which was an important strategic step, which takes the BDFA into a safer position and a more sustainable future and we are excited for this new chapter in the life of the BDFA.

Batten Disease Awareness Day on the 9^th  June was once again a day to remember with social media, as well as several municipal buildings across the country lit up orange. We launched our first Text to donate campaign which was a success.

We have continued to successfully diversify our income through Trusts and Foundations and just this month, we were delighted to welcome Philip Walker, an experienced Trusts and Foundations fundraiser to our staff team to develop this crucial income stream.

The BDFA Team and Trustees held another successful ‘Away Day Strategic Planning’ meeting in September where we discussed our long-term strategy and projects for 2025. We have also recently completed the development of our values framework, and we look forward to sharing this and our operational plans with families at our next quarterly Town Hall meeting. I would like to thank our incredible staff team for their tireless work in support of our community. Sarah Kenrick, Mimi Petty, Jo Nightingale, Lisa Forsyth and Sarah Chandler have continued to demonstrate their steadfast commitment to the BDFA and the Batten community. Finally, I would like to wish you all a very peaceful festive season with your loved ones. We know that for some of you it will be a difficult time, and we send our love and thoughts to you. We look forward to supporting and advocating for families in 2025 and to continuing in our mission to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone. Together we will make a difference. Best wishes, Liz Brownnutt Chief Executive Officer