Thanks for taking the time to visit my JustGiving page.
Ok, so I will running in the Reading Half Marathon - March 2010
Why? I want to raise as much money as possible for Niemann-Pick Disease
I first became aware of NPD after hearing heartbreaking stories of two sisters who my mum cares for, Emily, aged 14 and Sarah, aged 11 both diagnosed with Niemann-pick Type C. I have been so inspired and moved by the extrodinary strength and courage of the girls and thier family.
I will be digging deep, pushing myself through bounderies that I haven't even approached yet in support of the families who fight this unforgiving and relentless disease, every hour of every day and in so many cases, losing their beautiful children.
Please dig deep with me, donate what you can and forward my page to everyone that you know.
Thank you
Tinks :) X
What is Niemann-Pick Disease?
Niemann-Pick is the name given to a group of rare, inherited, life-limiting diseases.
In Niemann-Pick Type A this accumulation occurs very quickly, an affected child will usually die before reaching three years of age.
Niemann-Pick Type B does not affect the brain and, although growth may be slow, those affected will survive into adolescence or early adulthood, with many being able to lead a full and normal life.
In Niemann-Pick Type C, the brain and other organs are affected, leading to progressive intellectual decline, loss of motor skills, seizures and dementia. Speech can become slurred and swallowing problems may develop. The rate at which the disease progresses varies greatly between patients; children who develop neurological symptoms in early childhood are thought to have a more aggressive form of the disease, others may remain symptom free for many years.
The Charity;
The Niemann-Pick Disease Group (UK) is a registered charity aiming to make a positive difference to the lives of those affected by Niemann-Pick disease (NPD) and their families, through the provision of care and support, accurate information and the promotion of relevant research. We are committed to relieving sickness and distress amongst such families and, to providing emotional, as well as practical support. Through the development of a strong family support network, we are helping to reduce feelings of isolation and despair.
