Thanks for taking the time to visit our JustGiving page and find out why we are looking to raise funds for the Niemann-Pick Disease Group (NPDG UK) for the second year.

On Sunday 10th October, Hels and I will be running the Chicago marathon and will once again be raising much needed funds for NPDG UK to finance further research into the disease.

For those of you that are not already aware, our great friends Sue and Dave French have a wonderful son, William, who was diagnosed with “Niemann-Pick C” (NPC) shortly after he was born 9 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 nerves and motor skills. There are about 500 known cases worldwide, mostly kids, about 80 of whom are in the UK. 

As yet there is little in the way of treatment for NPC but there is a lot of exciting research currently 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). Significant progress has been made since our fundraising last year, particularly in the US where a number of drugs and therapies are being worked on to see if they can halt, or at least slow the progress of the disease.

With your help we raised over £12,000 last year and we are hoping that this year's efforts will help fund further UK based trials and research into Niemann-Pick C so the NPDG UK can continue supporting the search for a treatment for William and others like him. Sue and Dave have both recently been elected to the board of the charity so they can help in pushing forward UK research. Just for the record, Hels and I are paying our own way to get to Chicago so all the funds raised will go to the charity where they are most needed.

Both of us have struggled a bit with injuries whilst training this year so I suspect this is the last Marathon for us. 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.

Thanks again

Jeff & Hels