General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  
We Collect STAMPS!

With Christmas Cards landing on your doorstep, its time to remind you that we can raise funds by collecting STAMPS! Support the Batten Disease Family Association (BDFA) by sending your recycled stamps free of charge, simply follow these steps to…

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Ben Nevis 2016 – Fundraising Challenge

We are delighted to announce our fabulous fundraising event - Climb Ben Nevis Ben Nevis (Gaelic translation “Mountain of Heaven”) is the highest point in Scotland and the British Isles, standing at a height of 1343m (roughly 4000ft).  Fort William, on…

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Possibility Of A One-and-done Treatment For This Form Of Batten Disease

Breaking news for Batten Disease "Our study opens up the possibility of a one-and-done treatment for this form of Batten disease," said Beverly Davidson, Ph.D., director of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics at Children's Hospital…

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Video – Family Networking Weekend 2015

This October our Family Conference was held at the Village Hotel in Coventry. Families, staff and professionals started arriving on the Friday, meeting up with old friends and making new ones. The AGM on Saturday morning, included a keynote speech…

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Family Networking Weekend

Its our Family Networking Weekend and you can keep up to date on our Facebook page and Twitter. After the weekend, we will have our video from the event as well as lots of pictures for you to see.

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Disability Living Allowance UPDATE

With the help of Greg Mulholland, MP, the BDFA have met with Justin Tomlinson, Minister for Disabled People at the Department of Work and Pensions. This meeting enabled us to talk with him and his team about the process of…

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Science Is Again Threatened With Cuts: Help Us Tell The Government That Science Is Vital

Threats to science funding is a threat to us all, please visit and send an e-postcard to the Chancellor about why science and research is vital for Batten disease. The government is once again threatening research with cuts of 25%…

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Newsletters – Autumn/Winter 2015

Our Newsletter and Batten Bulletin are both now available for download. BDFA Newsletter Batten Bulletin

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ITV This Morning – The Harrison Family

The lovely Harrison family whose son James has CLN1 (Infantile Batten disease) will be raising awareness on This Morning on Monday 5th October. Please watch and let people know, a great platform to raise awareness.  

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Appeal To Build First Rare Diseases Centre For Children

Birmingham Children's Hospital is launching a £3.65 million appeal to raise money to build the UK's first rare diseases centre for children.   Read more here

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Make a donation:

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.

 

Thank you for your support.