General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
Sir Ian Botham’s Big Birthday Fundraiser

Join Sir Ian Botham and special guests for his big birthday fundraiser at the Wormsley Estate, where cricket, fine food and incredible live music combine for the perfect family day out! Friends from the past and present such as cricketing…

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BDFA 10th Annual Walk

We are now back in the office after a group of 80 of us spent the weekend at Bourton-on-the-Water in the Cotswolds for the Batten Disease Family Association 10th anniversary walk. We had sunshine and showers to make it a…

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2015 BDFA Family Networking Weekend And AGM

Dear Members and Supporters, We are pleased to invite you to the 2015 BDFA Family Networking Weekend and AGM which will be held on: Saturday 17th and Sunday 18th October 2015 from 10.30am – 4.00pm at the Village Hotel  -…

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Raffle Draw – Limited Edition Painting From Nikky Corker

We have an amazing limited edition Painting from Nikky Corker up for grabs.  We are running an Online Raffle draw, so you can buy your tickets online, and you will be emailed your ticket and number. It's a one off painting…

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Awareness Day – June 5th 2015

On June 5th 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 potential…

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Incredible Efforts From Fundraisers

We are always humbled by the incredible efforts that our fundraisers go to, to raise awareness and vital funds for our work. Jenny Shackleton is the aunt of beautiful Amber Jutla, and is not just running races but completing the…

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Cancellation Of Lab Open Day (18 June 2015)

Professor Jon Cooper has just been informed by Kings College that his laboratory will be moving between the 15-19th June. As you are aware, this is the same week that we had planned to have the PSDL/BDFA Lab Open Day for…

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Claudia Alejandra Soto – Fundraising

Claudia Alejandra Soto has just completed a Tough Mudder Challenge, ahead of doing the London 10K in July. If you would like to support her, visit her Just Giving Page!

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BDFA Spring Newsletter & Bulletin

Our Newsletter and Bulletin are now available for download below. Please have a read! Spring Newsletter 2015 Spring Bulletin 2015

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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.