Hello there!
Thanks for taking the time to visit our JustGiving page and find out why we are looking to raise money for the Niemann-Pick Disease Group (UK) (NPDG).On Sunday 27th September Hels & Jeremy (AKA Jeff!) are running the 2009 New Forest Marathon and between us, we are hoping to raise in excess of £5,000 to help the NPDG (UK) to finance research and UK based ‘parallel trials into the disease.
Our great friends from university days, Sue and Dave French have a fantastic son, William, who was diagnosed with “Niemann-Pick C” (NPC) shortly after he was born 8 years ago. NPC is a very rare inherited disease that causes a build up of toxic materials in the body, resulting in progressive decline in the performance of the body’s organs and motor skills. There are about 500 known cases worldwide, mostly kids, about 60 of which are in the UK.As yet there is little in the way of treatment for NPC but there is lots of research being conducted as it is believed that a breakthrough in treating NPC will help other similar disease groups (including cystic fibrosis, Alzheimer’s, even HIV). Currently, William and his family make an arduous journey to Washington DC each year to participate in a research project that is seeking to establish ‘bio-markers’ into NPC. The bio-marker study has enabled a therapeutic trial of another drug, due to start imminently in the US, hopefully leading to a further trial which NPDG would like to parallel in the UK.
Helen & I are keen to raise as much as possible to help finance future UK based trials and research into NPC so the NPDG can provide further help in finding a treatment for William and others like him.So go on, please give as generously as you can and help Helen and I raise as much as possible for what is unquestionably a good cause.
As an extra incentive, if we get to £5,000 or more, William will shave off all of Jeff’s hair (that hasn’t been cut for 9 months!) at the end of the Marathon. We’ll post a video as evidence the deed has been done!Jeff & Hels
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