General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
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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The BDFA Welcomes The Recent Announcement By PlasmaTech Biopharmaceuticals, Inc.

The BDFA welcomes the recent announcement by PlasmaTech Biopharmaceuticals, Inc. Professor Kielian and the UNeMed Corporation (the technology transfer and commercialization office (TTO) for the University of Nebraska Medical Center) are to be congratulated for their hard work and vision…

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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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Andrew Strauss Lands Top Cricket Job

Congratulations to our patron Andrew Strauss on being appointed Director of Cricket at the England and Wales Cricket Board, the top job in English cricket. We would like to thank Andrew for his continued support of the BDFA, and his…

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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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WOLF Run 2015 – Jenny Shackleton

Jenny Shackleton ran the WOLF Run to raise money for the BDFA. Although really cold, she did an amazing job and completed the course! Have a watch of the video! https://www.youtube.com/watch?v=NCA-xqUoBPw&feature=youtube_gdata&app=desktop

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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