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Just recently there has been some exciting developments in the US and a new drug that may help sufferers of this dreadful illness, called cyclodextrine has started to undergo phase1 trials. Should these be successful, they will bring the trials to the UK in about 18 months to 2 years, however this will come at a cost. As it stands, just like lots of other rare conditions, the government ignore it and will not fund it.
This is where we need your help!!!
We fundraise for Lleyton to help the family with some of his needs, and also do specific fundraising for the NPDGUK who will be helping towards funding any phase 2 trials in the UK.
We have a Fire Walk for Lleyton Planned on 10th March 2013 at Swinton Park Golf Club in Salford. We currently have 63 participants, ideally we would like 100.
If you can help with either making a donation sponsorship on this site for the walk or if you would like to join us please feel free.
Our email address is Prideinlleyton@hotmail.co.uk
Our website is www.prideinlleyton.co.uk,
Facebook group Pride in Lleyton or if your on twitter it's @prideinlleyton
All you need to secure your place is £10 deposit now and secure a minimum of £50 in sponsors payable on the night, this includes a hot meal for yourself.
Many thanks
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