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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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What do we need funds for?
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...
Claire, Learning Support Assistant to Ben (with Late Infantile Batten Disease)... and Barbados Marathon Runner for the BDFA.
Dr Sara Mole, whose lab at UCL has been researching into Batten Disease since 1992. Interested in raising funds and awareness to fight Batten Disease? Click here for some ideas There are many other ways in which you can make a donation to the BDFA. Remember, it doesn’t have to be cash – we can use your ideas, time, goods and services. Please get in touch with our BDFA Fundraising Team on 0115 965 4815 or bdfa.info@btinternet.com. Forthcoming Events
Run for Batten Disease in the Flora London Marathon 26th April 2009 or come along and support our runners! www.london-marathon.co.uk The name says it all! We want to make the London Marathon 2009 a special one for the BDFA by trying to get as many people onto it as possible running for Batten Disease and the Batten Disease Family Association. The BDFA have secured a Silver Bond Place for a runner to join in this world famous race. We hope to use this great event to raise as much money and awareness as possible for Batten Disease and the BDFA as we will only have a place every 5 years as we can’t even get on the waiting list for a Golden Bond place it’s that popular! Running for the BDFA in this Marathon would be such a special way to honour someone close to you who has been affected by Batten Disease or even if you just want to put on your running shoes for a great cause. So, let us know if you have already applied for a place in the ballot (and your application reference number) so that we are aware and then let us know in October if you manage to get that place or not. If you do get the chance to run we can then send you further info about other runners for the BDFA and support you in raising funds and awareness. If you don’t get offered a place direct, you will be eligible for us put you into our list for our draw late October and hopefully you will be lucky then and be able to still run it for us! It would also be wonderful if your family, friends and work colleagues could come and support our runners bedecked in BDFA T-shirts and ‘making a noise’ for Batten’s for the TV! Further details will be available in January on our organised viewing spots, picnic and other practical arrangements – do let us know if you are interested in coming along. Just let our Fundraising Team know on 0115 965 4815 or bdfa.info@btinternet.com.
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