General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Good Morning Britain’s ‘Tough Mums’ – Jenny Shackleton

We already knew she was tough, running over 150km of muddy obstacle races this year raising money for the BDFA, and now it's official. Jenny Shackleton has been chosen as one of ITV's, Good Morning Britain's 'Tough Mums'. Watch this Thursday…

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BDFA Conference Draft Programmes

Below you can download or read the draft programmes for the conference. Conference Programme Children's Programme

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Fundraiser Vacancy

This is a great opportunity for a motivated, highly-organised individual to make a significant contribution as part of a team to the development of a growing charity to help it achieve its Vision of a world without Batten disease.

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Dr Claire Russell’s Lab At Royal Veterinary College, London

Invitation to Dr Claire Russell’s Lab at Royal Veterinary College, London Friday 25th September 2015 11am-4pm Royal College Street London NW1 0TU

Recreating NCL (Batten disease) in animals allows us to understand what processes go wrong in the disease and enables the testing of new therapeutic approaches. In particular, zebrafish have unique features which make them easy to study and manipulate to help us to better understand these diseases.

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BATCure Research Consortium News

The BDFA is delighted to announce that the BATCure Research Consortium headed up by Dr Sara Mole at University College London has been awarded an EU Horizon2020 Innovation Grant of 6 million Euros to investigate potential therapies for CLN3, CLN6…

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Board Of Trustees Vacancies

Do you, a friend, relative or colleague have the time, skills and commitment to support our work and help us achieve our vision of a world without Batten disease? We have vacancies on our Board of Trustees and would love…

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Cycle To The Circle – Read About The Journey!

The Cycle to the Circle team have made it! You can read about the amazing journey and why they have done it here - Words form the team on completion - Worth it for 'the cause'. A big thank you to BDFA,…

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Right Chair, Right Time, Right Now’ Campaign

We have just pledged our support of the 'Right Chair, Right Time, Right Now' Campaign. This campaign is working to improve the quality and effectiveness of wheelchair services across England. You can pledge your support for this campaign here: http://www.rightwheelchair.org.uk/

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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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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