Last night, Channel 4 News ran an excellent four-minute feature on the current NICE re-evaluation of Brineura, highlighting the impact that the prolonged process is having on our CLN2 Community and the fear of the treatment not being approved by NICE.
The report features the Cielsik family, whose 5-year-old daughter Beatrice is currently receiving Brineura, and also includes parts of an interview with the family’s MP, Sally Jameson and our BDFA CEO, Liz Brownnutt.
Thank you to all who took part and to Victoria Macdonald at Channel 4 News for highlighting our story on national television.
Please help us by sharing, commenting and liking this post and help us to raise awareness. TIME IS RUNNING OUT! #BrineuraForCLN2 #ApprovalNow Watch it here