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Liz Christmas Post

Dear all,

As we approach the end of the year I would like to express our grateful thanks to all the families in our community for their tremendous support this year. It has been a challenging year for the BDFA, but despite the ups and downs 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 families across the UK with 125 children and young people with Batten disease. In the last six months we have enabled 26 families to challenge losses in support provisions and have these decisions successfully turned round. We have provided an Online training programme for CLN3 professionals with around 30 participants at each session.

Our peer befriending service continues to grow with 30 one to one befriender sessions having taken place since July. We have established a Dad’s chat and Mum’s chat group for all CLN subtypes and these are growing in attendance.

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 are working hard towards the BDFA submission for the re-evaluation of Brineura treatment for patients with CLN2, having successfully built a detailed survey for families and education providers. We have maintained and strengthened our relationships with clinicians, scientists, pharmaceutical companies and patient advocacy groups, keeping abreast of all the latest research developments.

We have recently completed our research study examining the diagnostic odyssey of Batten disease. The study, led by our Scientific Committee and in collaboration with the Health Policy Partnership will be published in a peer review journal early next year and we hope that the findings will help to improve patient diagnostic and care pathways and ultimately lead to earlier diagnosis and better care management for children affected by Batten disease.

Our newly designed and improved website is progressing well and we look forward to launching this early in 2024. Earlier this year we ran a ‘Batten Brilliance’ campaign for Rare Disease Day and it was an absolute joy to share posts about all the incredible talents and achievements of your children and young people who are living with a diagnosis of Batten disease. As always, Batten Disease Awareness Day was a day to remember and social media was awash with orange.

We have continued to successfully diversify our income through Trusts and Foundations and we are hugely proud to be one of Global’s Make Some Noise charities for the next two years. Our recent Big Give Christmas Challenge was highly successful and we raised a phenomenal £12,242.50 towards our Peer Befriending service. We are extremely grateful to everyone who supported this matched funding initiative. Our community fundraising is stronger than ever and I am pleased to share that we have had a strong start to our new financial year which began in September.

The BDFA Team and Trustees recently held an ‘Away Day Strategic Planning meeting’ where we discussed our strategy and projects for 2024. We look forward to sharing details with you all at our next quarterly Town Hall meeting at the end of February 2024.

I am immensely proud of our small staff team for their tireless work in support of our community. Thank you to Sarah Kenrick, Mimi Petty, Jo Nightingale, Lisa Forsyth and Sarah Chandler for their incredible 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 continuing to support and advocate for you all in 2024 and ensure that no family walks the path of Batten disease alone.

Best wishes,

Liz Brownnutt

Interim CEO

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