BDFA Peer Befriending Team had a weekend away together in London in April, organised by Peer Befriending Coordinator Mimi Petty. The team met together in person to receive training and also to spend time together, offering one another support. ‘Thank…
Dear Families, Theranexus and their partner Beyond Batten Disease Foundation, have announced final and positive safety and efficacy data in the Phase I/II trial testing Batten-1. You can find a link to the press release here (https://www.theranexus.com/images/pdf/Theranexus_PR_Final_results_18_months_VF.pdf). If you require…
As part of our work with Disabled Children's Partnership we are supporting Newlife the Charity for Disabled Children new report, 'Fight For Our Future', which reveals the bleak situation facing disabled children and their families.The report paints a bleak picture,…