Today is to raise awareness and celebrate the people in our community but we also remember to families who have lost loved ones. On Batten disease awareness day we remember all of the children and young people who we have…
We are looking forward to celebrating the incredible families in our community and raising awareness together. Today can also be also be difficult for families affected by Batten disease and we send our love to you all.
Here is Lisa, our Team Admin Officer, raising awareness in her BDFA T shirt and sharing her thoughts on awareness day, as well as our Text to Donate campaign details. Thank you so much for your donations so far, your…
It has been amazing to see all the support for Awareness Day so far this week, and we are looking forward to turning our social media orange tomorrow! Thank you so much to everyone getting involved, please tag us in…
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,…
Together for Short Lives has launched their ‘Short Lives can’t wait’ campaign this evening and we are encouraging families in the Batten community to get involved. Seriously, ill children and their families are not getting the care they need, because…
Dear Batten community, Over the past few years, Lexeo Therapeutics has been involved in developing an AAV-mediated gene therapy program for treating CLN2 Batten disease. However, additional funding and resources are required for further studies, and Lexeo is now looking…
Update from Disabled Children’s PartnershipThe amazing parent campaigner Andrew Turner has secured a Westminster Hall debate on Child Trust Funds for disabled young people. This is happening next Tuesday 19th March at 4.30 pm. The Westminster Hall debate will…
