General: 01252 416323   |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
Virtual Warrior 5K For The BDFA

During the month of December Virtual Warrior are raising money for The Batten Disease Family Association (BDFA) to commemorate the life of a very special little girl named Amber, who sadly passed away in February 2016. All you have to do…

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Ollie Wins A WellChild Award

We are so thrilled to see Ollie Carroll will receive a Well Child award, congratulations to you all and Ollie's Army Battling Against Battens for your amazing efforts in raising awareness and fundraising. For many parents, life’s simplest joys are found…

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Francis Mills Completes 297 Mile Ride From London To Paris

Francis Mills trained vigorously for the challenge, overcoming the loss of his specialist bike after it was snatched from his workplace in June. Left without his £550 white Trek bike, the fundraiser saw supporters far and wide rush to his…

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BATCure: Developing New Therapies For Batten Disease

BATCure is a 3-year research project funded under a European Union call (New Therapies for Rare Diseases). The goal of the project is to advance the development of new therapeutic options for patients and their families living with CLN 3,…

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A New Challenge For Professor Jonathan Cooper

Long-time Batten disease researcher and BDFA Scientific Advisor Professor Jonathan Cooper is leaving King’s College London this summer to take up a new post at the Harbor UCLA Medical Center in Los Angeles. As in London, Jon will continue to…

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How It Feels To Know You Will Outlive Your Child

There are few things more tragic than the sudden death of a child, an event that can leave parents bereft, heartbroken and railing at the unnatural order of things.

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Ben Nevis Climb Complete!

Well done to our intrepid team of Ben Nevis conquerors! Apparently it was a lot more difficult than anticipated, so why not support them by donating to the BDFA HERE

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A Successful Education Training Day

Our Education Training Day at Linden Lodge last Friday was a great success. It was great to be able to bring professionals together to network and to learn more about Batten disease. We packed a lot into a short space…

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Awareness Day – 3rd June 2016

On the 3rd June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into…

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Batting For Batten Lunch 2016

We are very excited to announce our Charity lunch in the Long room at Lord's: Batting for Batten. The lunch starts at Midday until 4PM, on Wednesday 6th July 2016. Our Patron Sir Andrew Strauss will be in attendance along with other world…

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Make a donation:

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

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

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

Thank you for your support.