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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.
You can make a
difference...
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“Over the
past four years, I have seen Ben lose his ability to walk,
talk, see and eat and I want to help in some way improve the
future for children like Ben through raising awareness and
funds for the BDFA."
Claire, Learning
Support Assistant to Ben (with Late Infantile Batten Disease)...
and Barbados Marathon Runner for the BDFA.
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“The BDFA
helped research by financially supporting a new idea that
has radically changed our understanding of Juvenile NCL.
This in turn has led to new work towards finding a therapy.”
Dr
Sara Mole, whose lab at UCL has been researching into Batten
Disease since 1992.
Contact our Fundraiser:
To find out more please call Georgette Ward, our Fundraising
Officer on 01603 760111 or email:
fundraising@bdfa-uk.org.uk or alternatively by
post at BDFA, c/o Heather House, Heather Drive, Tadley,
Hampshire, RG26 4QR.
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