Dear All This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have two quotes going through my mind as they have been…
Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile Batten disease (CLN3). Sarah Kenrick is the Outreach Liaison Nurse…
As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients with Lysosomal Storage Disorders (LSD). This group works together on…
We are delighted to have limited stock available of the Erasmus+ funded book on CLN3 and education. It has 34 chapters on a wide range of topics including: Perspectives on education and training Planning education, assessment and intervention for students…
Yesterday, Wednesday 13 Nov 2019, the first infusion of Brineura was given to a child at Great Ormond Street Hospital as part of the new Managed Access Agreement between BioMarin and NHS England. The child would not have been able…
We would like to announce that we are looking for a new part-time CEO to take the BDFA forward. The new CEO will work 30 hours a week, in line with our restructured budget. Samantha Barber is leaving the BDFA…
As you recall, the Dementia Strikes Children Too campaign has been working to raise awareness of the conditions that affect our children and campaign for better access to services and support for our families since 2018. Now, building on the campaign’s success…
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten disease to maximise their quality of life and secure the…
Life-changing treatment on the NHS for children with rare, deadly disease We are beyond delighted to announce that Brineura has been approved. Further details to come. Families have been absolutely incredible in their strength and resilience in getting this over…
Latest research has shown the importance of singing with Juvenile Batten Disease. Do you know someone with a diagnosis of JNCL? Would they be interested in taking part in a project about music? Who can participate? If you are the…