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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 Family Networking Scheme |
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The Batten Disease Family Association have traditionally aimed to ensure that “No family will go through the devastating journey of Batten disease alone,” We recognise that many Batten families can feel isolated and alone in their family experience. The BDFA Family Networking Scheme offers our members the opportunity to make contact with other families, to share ideas, experiences and ultimately to speak to someone else who understands. Would You Like to Become A Member of Our Family Networking Scheme ? Everyone who signs up to become a member of the BDFA will have the option to tick the “I would like to be a part of the Family Networking Scheme” box. Current members will also have the option to join by ticking the same box on their membership renewal form or by contacting Sam Simpson, Family Support Officer, on 01233 639526 or support@bdfa-uk.org.uk. How Does the Family Networking Scheme Actually Work ? Once a family has joined the BDFA as a member their name, contact details and brief family information will be included in our ‘Family Networking Directory.’ The family will then be sent a copy of the directory to look through and can then independently choose to make contact with any of the other families on the list. On-going Support and Information The directory will be updated on a regular basis and an email alert will be sent out to the networking group when a new member joins the scheme. At all times Sam Simpson, Family Support Officer, will oversee the scheme and be available to respond to any queries. Who Should Join ? Anyone over 18 who is related to a child or young person with Batten disease. The scheme is not restricted to parents. We welcome grandparents, aunts and uncles... any family member who wishes to make contact with other families experiencing Batten disease. Here Is What One Member Thinks Of Family Networking ......  “Our whole world exploded when we had our son’s diagnosis of Late Infantile Batten Disease. For a few months, we lost our direction in life. Fortunately we made contact with the BDFA, met other families and with the BDFA and the other families support, we learnt to rebuild a new life around Batten’s. Each step along the journey has been painful, but that pain significantly reduced by the encompassing support and information people connected with the BDFA have given us, many who have become our friends.” Julie Pickering, Mum If you would like to be a part of our Family Networking scheme then please contact Sam Simpson, Family Support Officer (funded by the Roald Dahl Foundation) on 01233 639526 or support@bdfa-uk.org.uk |