Raised: 270%
Target: £5,000.00
Raised so far: £13,501.00
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My story

 

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!

Thanks again,

Jeff & Hels

 

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Great cause! Donation by Ray Pritchard 11/11/09  

Congratulations! Donation by The Bauers 06/11/09  

£35.00

Great effort mate! Hope all is well with you, Hels and the kids. Donation by Dip, Tracey and Alaska, Downunder 01/11/09  

£50.00

Hels & J.T. - Fantastic achievement - sorry its late! Would be great to catch up soon. Tony, Lisa, Ella & Phoebe (aka The Barkers) Donation by Tony Barker 25/10/09  

£40.00 + £11.28 Gift Aid

Great running guys. Impressive stuff! Donation by Morris family 13/10/09  

£40.00 + £11.28 Gift Aid

Jeff, well done to both of you... Donation by John Glendinning 06/10/09  

£20.00 + £5.64 Gift Aid

Donation by Sue French 05/10/09  

£10.00

Sorry this is late, but well done to both of you, what a brilliant achievement! Donation by The Woodies 05/10/09  

£20.00 + £5.64 Gift Aid

Dear Helen And Jeremy. We are a little late in donating but very well done to you both!!!! Donation by Emily and Julian 05/10/09  

£20.00 + £5.64 Gift Aid

sorry it's late was off on hols, well done and nice hair! Donation by marnie 01/10/09  

£20.00 + £5.64 Gift Aid

Sorry donation is a bit late! Well done to you both. Donation by Sarah and Chris Bowry 30/09/09  

£25.00 + £7.05 Gift Aid

You are both amazing - from the WWs Donation by Nick WW 30/09/09  

£50.00 + £14.10 Gift Aid

sorry for the delay guys - great effort Mike and Liz Donation by mike binns 30/09/09  

£50.00 + £14.10 Gift Aid

Well done guys ~ sorry I took so long Donation by Jo Jones 30/09/09  

£50.00 + £14.10 Gift Aid

Well done FMJ (and childhood sweetheart). Now get practising...Greg & John await! Donation by Darren, Saskia, Abi & Billy 29/09/09  

£50.00 + £14.10 Gift Aid

well done Jeff & Hels. Don't know what your time was but who cares you have raised over £ 12k !!! Donation by Julian & Nikki Brown 29/09/09  

£20.00 + £5.64 Gift Aid

Well done you two.... Not bad for a couple of 'forty somethings'! Donation by Clive Selley 28/09/09  

£50.00 + £14.10 Gift Aid

Donation by Michael Thewlis 28/09/09  

£20.00 + £5.64 Gift Aid

Great you both made it to the finishing line - and slightly quicker than it took me to do this! Donation by The Greens 28/09/09  

£20.00 + £5.64 Gift Aid

good time JT, Hels was just showing off, hope the nips aren't too sore! Donation by The Whartons 28/09/09  

£50.00 + £14.10 Gift Aid

Allez les Tippers! Donation by Sue & Tony Waller 28/09/09  

£30.00 + £8.46 Gift Aid

A massive thank you to everyone, your generosity is overwhelming. Really hot y'day but they both beat previous times and were amazing!! Donation by David and Sue 28/09/09  

£150.00 + £42.31 Gift Aid

Best wishes Donation by Kirsty 28/09/09  

£20.00 + £5.64 Gift Aid

Hope you had a good day - maybe a bit hot?!! Donation by Stephen Green 27/09/09  

£15.00 + £4.23 Gift Aid

Good Luck to you both for tomorrow - hopefully any pain felt will soon become a distant memory........Jeremy!! Donation by The Craiks 26/09/09  

£25.00 + £7.05 Gift Aid

Paddypower are not taking bets on you both finishing. They must believe your certainties. Have a good game. Donation by Nanny, Dan Dam & Willow 25/09/09  

£50.00 + £14.10 Gift Aid

Fantastic effort folks. I'm sure you've got the motivation to see you through and actually ENJOY IT. Good luck Donation by Jonathan Middleton 25/09/09  

£25.00

Ding dong Jezza and Hels! We'll be thinking of you... Donation by Jan, Jane and our clans 25/09/09  

£50.00 + £14.10 Gift Aid

Will you be dragging the Llewelyn-Bowen wig on a leash?! Good luck. The Knudsons Donation by Spence Knudson 25/09/09  

£50.00 + £14.10 Gift Aid

Will be thinking of you on Sun guys. Jeffa, if you beat Hels' time I'll double my donation (to £2.46?). Good luck! love us x Donation by Saraaaaaaah 25/09/09  

£30.00 + £8.46 Gift Aid
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* Total raised online: £8,501.00
  Offline donations: £5,000.00
  Gift Aid plus supplement: £1,490.64

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