Thanks for taking the time to visit my JustGiving page.
Carl Hitchens and I both ran the New York marathon in November 2008 to raise funds for the NPDG (UK). Sadly, Carl’s son Harry lost his courageous fight with Niemann-Pick type C in 2010 at the age of 7
Niemann-Pick is a rare genetic disease and has devastating consequences for the family. It has sometimes been referred to as childhood dementia, but this is only one of the symptoms. Children suffering from Type C can expect to encounter a lack of co-ordination, clumsiness and a difficulty in walking. In addition, there are difficulties with learning, swallowing and articulating words. - Respiratory dysfunction, epilepsy and psychiatric disorders are also encountered
There is no cure for this disease and the Niemann-Pick Disease Group (UK) is the only charity in this country that helps families by providing, care, information and support.
This year I ran the Great Wall of China marathon on the 21st May in memory of Harry and all the other children who have lost their battle with Niemann-Pick disease.
Despite a calf injury I managed the run in 5hr 01min 04 seconds. I came 12th out of 202 female competitors and 2nd in my category. However I was placed 100 out of a total of 582 competitors which is pretty good and Harry would have been really proud !!
Every penny I raise will go to the NPDG(UK). Half of the money will go towards research into therapies that will help existing children to live a better quality of life and the other half will go to supporting the cost of the recently appointed Families Officer who will bring much needed day to day support to the families affected by this devastating disease.
Please, please, please make a donation so that between us we can make a difference to those families affected by Niemann-Pick disease .I would be very grateful for any donation you can make and in return, I promise to make every mile and every penny count.
Thank you for all your donations,
Helen
Donating through JustGiving is simple, fast and totally secure. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
