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| "The BDFA has given me hope,
encouragement and support and helped me recognise the good things
and that happy times can still be accomplished by my daughter and
the rest of the family" Sharon Burnham |
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BDFA Fundraising |
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Why donate to the BDFA ?
We want to continue to develop the best possible service and information base; to raise awareness so that all children and families can be supported and helped from the moment of diagnosis, at each stage,during crises and after loss. We want to be able to reach more families and professionals so that affected children/young adults can enjoy life and reach their maximum potential. All this takes more and more resources so that the right information and support is available for free to those who need it, when they need it and in the way that is right for them and their child.
As Batten Disease is a rare, incurable genetic disorder families often feel isolated, confused and scared about what the future holds for their whole family. Our main aim is that no-one will go through the devastating journey of Batten Disease alone. General funds are essential to sustain and train our team of volunteers assisted with paid core support.
Our main hope is that one day soon a cure will be found, so we aim to continue to support research into the understanding of the disease and potential therapies for the future. This involves substantial amounts of funds to be raised and used in the most effective way.
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