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TFSL4531 Short Lives Can’t Wait Logo

Together for Short Lives has launched their ‘Short Lives can’t wait’ campaign this evening and we are encouraging families in the Batten community to get involved.

Seriously, ill children and their families are not getting the care they need, because of where they live. Governments across the UK need to act now, because children like Jaxson cannot wait any longer.

Jaxson’s dad Jim is writing to the Prime Minister and let his government know that every life, no matter how short it may be, deserves the best care. Please join us and add your name to Jim’s letter below.

You can help by going to the link below and Signing an open letter to the Prime Minister, which has been written by a parent of a child with a life-limiting condition. The more people who sign, the stronger the message will be that we will not accept the postcode lottery in lifeline care for children.

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

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