General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
BDFA AGM- Wednesday 21st August 2024, 7pm

Batten Disease Family Association AGM Wednesday 21st August 2024 NOTICE OF MEETINGNOTICE IS HEREBY GIVEN that the 2024 Annual General Meeting of the Batten Disease Family Association will be held via a Zoom video call between 19:00-20:00 pm on Wednesday 21st…

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CLN3 Update, Research Call 19th Jan 2023

New advance to the Theranexus and BBDF Batten-1 program for juvenileBatten disease (CLN3) Read the press release from Beyond Batten and Theranexus regarding Phase I/II trial data at the link below. https://beyondbatten.org/wp-content/uploads/2023/01/Theranexus_PR_Batten-1_Program_VDEF.pdf They are hosting a Quarterly Family Research call…

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Would You Like To Become A BDFA Peer Befriender? Could You Give Support To Another Family Living With Batten Disease?

Why not kick off 2023 with a new challenge to help support other Batten families! The course starts on Tuesday 24th January 2023, where you will have expert training and become a vital part of our wonderful Peer befriending volunteer…

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Pride Of Batten Awards 2022, Nominations Open!

We are pleased to announce that we will be running the Pride of Batten awards again this year. This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family…

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International Ask-An-Expert: Biotechs And NCL Clinical Research: Watch Recording Here

The BDFA was delighted to join international partner BDSRA and others for an enlightening and informative international session looking at the current research and treatment landscape for Batten disease, in the light of recent Dear Families   The BDFA was…

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Ever Wondered How Peer Befriending Helps Parents?

One parent who previously benefitted from having a Peer Befriender said…  “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…

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Training For Educators With Batten Behaviour, Adults And Transitions Specialist Sarah Kenrick

We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…

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Staff News- Mimi Petty, Our New Peer Befriending Coordinator

BDFA STAFF NEWS The BDFA is delighted to introduce Mimi Petty as our new Peer Befriending Coordinator. Mimi is a bereaved parent and her son Bertie passed away in 2019 from CLN1 Batten disease. Mimi is already well known to…

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CLN5 Update- Neurogene NGN-101 Now Enrolling Participants At Clinical Trial Site In University Of Rochester Medical Center In Rochester, NY, USA

Neurogene Inc., a biotech company committed to developing life-changing genetic medicines for patients and theirfamilies affected by rare neurological disorders, is excited to share an important update on their development programfor CLN5, a subtype of Neuronal Ceroid Lipofuscinosis (NCL), or…

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BDFA STAFF NEWS, A Warm Welcome To Elizabeth Jones

BDFA STAFF NEWS A big welcome to Liz Jones to the BDFA family support team! Liz is a qualified Child & Family practitioner working with families for over 16 years in both voluntary and public sector. Liz has spent most…

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Donate to the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

Thank you for making a donation to the work of the BDFA.

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease