General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
BDFA Peer Befriending Team Training Weekend

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…

Read More

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 ( If you require…

Read More
We’re Supporting Newlife Charity’s New Report, Fight For Our Future

             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,…

Read More
Help Support Short Lives Cant Wait By Signing The Letter To The Prime Minister

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…

Read More
Joint Statement To The Global Batten Disease Community Regarding Update On Lexeo’s CLN2 Disease Gene Therapy Program

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…

Read More
Invite Your MP To Child Trust Fund Westminster Hall Debate, Important Debate In Parliament Next Tuesday 19 March At 4.30pm

                 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…

Read More
Next Quarterly Town Hall Meeting

Dear Families,The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 7pm on Wednesday 13th March.The purpose of the meeting is to provide families with an update from the team and to…

Read More
Today, We Stand Together For Rare Disease Day! 29th February 2024

Let's raise awareness and support for those living with rare diseases. Every person battling a rare condition is a warrior, showing incredible strength, resilience, and determination in the face of unique challenges. Let's shine a spotlight on the importance of…

Read More
NEXT DAD’S CHAT, Wednesday 28th February At 8pm

A chance to come together on Zoom with other dads from the BDFA community and have a chat.Led by trained Peer Befriender Andrew Dawkins and James Yarrow. If you are interested in joining the session or to find out more,…

Read More
Theranexus Update For CLN3 Programme

Dear Families, You may be aware that there was a press release last week from Theranexus about the Batten-1 clinical trial for CLN3 (Theranexus_PR_Cash_Position_Dec_31_2023_VDEF.pdf). Beyond Batten have followed this up in an e-mail to their registered families and the BDFA…

Read More

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.