Chris's The North Downs Way 100 page
Chris Cawthorn is raising money for Cambridge Rare Disease Network
Story
Thanks for taking the time to visit my JustGiving page.
Alright folks, I've been doing a bit of running recently and it got completely out of hand a few months ago when I entered a 100 mile race, which will take place in August. I actually chose to enter without any thought of raising money for charity but have since decided I would like to raise money in support of the Cambridge Rare Disease Network.
Rare diseases are much more common than they sound, with around 3.5 million people living with one in the UK. They can be relatively well-known diseases, such as Muscular Dystrophy, marked by the progressive weakening and wasting of muscles. Some children lose the ability to walk before they've even had a chance to grow up. Other diseases are extremely rare, such as Wolfram Syndrome, which leads to diabetes, blindness, deafness and a life expectancy of just 30.
These rare diseases tend to be overlooked by doctors, researchers and the general public. This means that individuals do not get the support that they need. After repeated misdiagnoses, many will find that there is no treatment available, no research into their condition and no national support group or charity.
This is where the work of the Cambridge Rare Disease Network is invaluable. They provide vital support to children, their families, and adults living with rare diseases, especially through groups such a UNique feet - a dance group which helps bring families together, feel supported and engage in activities together. They also, crucially, help to link children with the professionals involved; clinicians, researchers, universities and hospitals so that all possible knowledge and experience is being shared to help raise awareness and ultimately create cures and treatment pathways.
This is where the work of the Cambridge Rare Disease Network is invaluable. They provide vital support to children, their families, and adults living with rare diseases, especially through groups such a UNique feet - a dance group which helps bring families together, feel supported and engage in activities together. They also, crucially, help to link children with the professionals involved; clinicians, researchers, universities and hospitals so that all possible knowledge and experience is being shared to help raise awareness and ultimately create cures and treatment pathways.
The long term goal is to find cures for these diseases but in the short-term it is equally important to help children and adults with rare diseases, as well as their families, to feel recognised, supported and included in society. Just a few pounds could make a huge difference!