General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
HAVE YOU SIGNED UP YET? ‘13 In Whatever Way To Raise 13k For Awareness Day

HAVE YOU SIGNED UP YET???? ‘13 in whatever way to raise 13k for Awareness Day ’We have launched an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the…

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International Batten Disease Awareness Day News 2021

The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…

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The Amber Trust Launches Major New Music Service, With Music In Mind In Association With The Amber Trust

With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust's pioneering new music service for families who have a visually impaired child with neurodegenerative disease, such as Batten disease. This webinar…

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Katie’s Fundraising Story

Katie’s Fundraising Story My family has recently found out devastating news that my amazing nephew has a terminal disease, CLN6 Battens disease, which will progressively take his vision, motor and neurological functions and we have until possibly early teens with…

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BDSRA Online Conference July 10th – 12th 2020

BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…

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International Batten Disease Awareness Day- Tuesday 9th June- Our Plans

International Batten Disease Awareness Day Tuesday 9th June 2020 4 DAYS TO GO! We are getting very excited about Batten disease awareness day next Tuesday 9th June which we are sharing with international peers. We are kicking off our awareness…

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ONE WEEK TO GO Untill International Batten Disease Awareness Day 2020!

ONE WEEK TO GO until International Batten Disease Awareness Day! What you can do to raiseawarenes and be orange on the day? Use #battendiseaseuk #battenday2020 on your social media posts Dress in orange, but not just you, the dog, the…

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BDFA 2020 Conference News

Conference News Postponement of our face to face conference   As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for…

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Reminder Of Virtual Family Meeting Tomorrow- Friday 1st May, And Welcome Richard

A Quick Reminder, it is not too late to sign up!   Just a reminder that we have our ‘pre-AGM’ family meeting tomorrow at 2pm on Zoom about the BDFA’s accounts (year end 2019) and our current position and future…

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***IMPORTANT BDFA MEETING NEWS** Virtual ‘family’ Meeting To Share Our Future Plans And Financial Position

  Virtual ‘family’ meeting to share our future plans and financial position  Friday 1st May from 2-3.30pm The BDFA is pleased to invite you to a virtual ‘family’ meeting on Zoom to discuss our latest accounts (year end August 2019)…

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To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.