Thanks for taking the time to visit my JustGiving page.  I've dusted off my plimsolls (I think they call them trainers these days) to take up running again, and this time for charity.  My wife, Helen, explains why this cause is so close to our hearts:

James is running The Great South Run (10 miles) in October to raise money for The Prion Clinic (part of the Neurological Hospitals, London). The charity is close to our hearts because 9 years ago my father fell ill and rapidly his mental and physical capacity completely broke down.  He died within 7 months, a few days after his 60 birthday.  At the time we did not know what was wrong with him but later discovered that he suffered from a rare genetic disease known as Fatal Familial Insomnia.  This cruel disease is rapid, fatal and for which there is no known cure.  The brain literally starts to develop holes in it (spongiform – resembles a sponge) and the neurological signals to the mind and body are severely disrupted and death quickly follows.

My Grandfather has been diagnosed retrospectively on his symptomology alone as he died in the early ‘70s when little was known about DNA.  He was only 49 when he died.  No one knows why the faulty prp gene implodes and takes the lives of otherwise fit and healthy people so young.  As little is known about this condition treatment can only be found once the disease itself can be understood.  This seems a long way off, despite the huge amount of hard work by a dedicated team of researchers.

The National Prion Clinic (NPC) is part of the University College London Hospitals. The NPC monitor the families in an effort to try and understand why this genetic defect suddenly develops to a fatal disease.  The Clinic provides vital care and support to those families suffering with the inherited condition.  The Clinic provided counselling and testing for my family when the gene was first discovered and my family are part of on-going research.

Losing a loved one is hard enough but to know the early demise of your other family members is too harrowing to describe.

Given that the disease is rare, and little heard of, it does not attract big funds via charitable donations. You will understand why I am very keen to raise as much money as possible for the clinic.

Although this page is set up under the charity umbrella for the UCLH, all the money raised goes specifically to the Prion Clinic.

 

Further information about the clinic and the disease can be found at the following link: http://www.prion.ucl.ac.uk/clinic-services/information/inherited-prion-disease/

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

So please dig deep and donate now.