Following a robust selection process, the Batten Disease Global Research Initiative has awarded research grants to six recipients totaling USD $320,000! Tune in next week as we unveil our grant recipients: https://battenresearch.org #BattenResearch #BrainAwarenessWeek #BattenDisease #RareDisease #Science #Research #Clinical #Grant"
It’s Brain Awareness Week – a global campaign to foster public enthusiasm and support for brain science. Let’s take some time to learn more about the Batten Disease Global Research Initiative. Big news is coming soon! Visit the GRI website:…
Tern Therapeutics have published a press release and written a community letter to update you on their progress in the TTX-381 and TTX-181 clinical trials. These are AAV9 based gene therapies, TTX-381 is looking to address vision loss and has…
We are thrilled to announce that the Cambridge Institute of Music Therapy will be running a research project for children with Batten disease this year. Funded by the Worshipful Company of Musicians, Dr. Rebecca Atkinson will be interviewing parents about…
The BDFA is delighted to share that Tern Therapeutics, a biotechnology company based in the USA have entered into a global licensing agreement with REGENXBIO Inc. for RGX-381 and RGX-181. The company’s Chief Executive Officer, Alex Bailey and Chief Medical…
We are pleased to advise that Neurogene Inc. have announced that enrollment is now complete for its Phase 1/2 investigational trial of NGN-101 Gene Therapy for the treatment of CLN5 Batten disease, with a total of six patients (Clinical trial…
The BDFA is pleased to announce that we are partnering with our global counterpart organisations to offer in-kind support of a Batten Disease Global Research Initiative.At their recent Annual Family Conference in St Louis, the BDSRA announced the formation of…
Dear CLN3 families, As you know we are in regular contact with the groups involved in the Miglustat trial. Today we received this communication from Theranexus: “We do continue to work on the Phase 3 Study, as you may have…
Dear Families, The LSD Collaborative is a group of 11 charities supporting lysosomal disorders. They have prepared a survey for families, individuals and carers of the LSD Community living in the UK. It is designed to help them understand the…
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…
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