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The
Batten Disease Family Association (BDFA) was formed in
1998 by a small group of parents of children with Batten
Disease with the help of SeeAbility and
Contact-a-Family. Registered Charity status for our
national support network was granted in 2001. In 2003
we received grant funding from the Jeans for Genes
Campaign to carry out research projects into patient
support and clinical assessment to inform our support
provision. In 2006 we employed a part-time Charity
Development Officer and restructured our Board of
Trustees and in 2008 a part-time Fundraising Officer
joined the team to support our essential work and
ambitious plans for the future.
The
BDFA is committed to:
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Preserve and protect the health and promote the
welfare of persons affected by all types of Neuronal
Ceroid Lipofuscinosis (NCL) commonly known as Batten
Disease
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To
advance the education of professionals, carers and
the general public on the subject of Batten Disease
and its implications for the family
To
promote research into the management of Batten disease
and to publish the useful results thereof and to support
organisations promoting research into Batten disease
What do we
do and what research do we support?
Read more
about our ethos in our new Mission Statement.
To read our about our activities and plans click here
For a
profile of our current team click here
Join Us
Become a family or professional member of the BDFA as
one step in the Batten’s Journey.
As well
as being able to support you as best we can, the more
members we have, the wider and stronger our network and
the louder our voice to raise awareness, seek funding
and facilitate research in the hope that one day soon a
cure will be found.
Click here for a membership form.
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