General: 07354 486586   |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
International Epilepsy Day

It’s International Epilepsy Day - a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. While everyone’s epilepsy journey is unique, we take many steps in common…

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BDFA CLN2 Families Meeting, Thursday 21st Dec, 12pm- Re PR And Communications For Regenexbio News Last Month

   Dear Families,As per our communication on social media yesterday the BDFA would like to invite you to attend a short call on Thursday 21st December at 12pm.The purpose of the call is to update you on our PR and…

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Summary Of Beyond Batten Disease Foundation Quarterly Family Research Call- Phase III Batten-1 Clinical Trial, Updates On CLN3 Research

Dear Families, At 4pm CST (10pm GMT) on 15th November 2023, Beyond Batten Disease Foundation held their quarterly Family Research Call. This was led by Mary Beth Kiser (CEO), Dr Ineka Whiteman (Scientific Consultant) and Craig Benson (Chair of the…

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News From Neurogene

The BDFA has been asked to share some exciting news from Neurogene. If you would like to read more you can find more information at the link below the letter. Please do not hesitate to reach out to us if…

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BDFA Family Support Service – Update

Dear Families, It is with sadness that we are writing to announce that our dedicated colleague Sian Fisher left her role as the Head of family support at the BDFA. Sian’s last day was on Friday last week. We are…

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Dr Joanna Nightingale, Head Of Scientific Affairs Attended A Roundtable Meeting Hosted By MAP Patient Access Limited

On the evening on Wednesday 26th April, Dr Joanna Nightingale, Head of Scientific Affairs attended a roundtable meeting hosted by MAP Patient Access Limited on “Harnessing the potential of advanced therapy medicinal products (ATMPs) – the case for change” at…

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Egg-citing BDFA News For Easter

Launching later this week the BDFA will have special Easter hunt buckets available to buy from our online shop, filled to the brim with delicious chocolates, including some specially wrapped in BDFA colours and our logo. Our wonderful supporters, Beefy's…

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Welcome To Sarah, BDFA New Fundraising Assistant

We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…

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28 February 2023 Is #RareDiseaseDay

Rare Disease Day is the global movement dedicated to raising awareness and generating change for the 300 million people living with a rare disease worldwide like Batten Disease Since 2008, the global rare disease community has come together on Rare…

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DATE FOR NEXT DADS CHAT

Thursday 23rd March. 8pm The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer Befrienders Andrew Dawkins and James Yarrow (both amazing Batten parents)…

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