Jason Gregory
Jason's Chamonix to Venice
Fundraising for Kennedy's Disease UK KD-UK
Story
Around 30 of us are riding from Chamonix to Venice to raise money and awareness for Kennedy's Disease.
http://kennedysdiseaseuk.com are the only UK based charity for Kennedy’s Disease (KD); a non-profit organisation run by volunteers and sufferers.
The aim of the ride is to help raise awareness of this awful disease and we want to make sure that people out there hear about Kennedy’s Disease and the effect it has on sufferers, carers, family and friends. There is only one centre carrying out vital research in the UK and we hope that our efforts will help them to find a cure for the disease.
The trip itself is entirely self-funded (hotels, food support team etc) so all proceeds go straight to the charity. It will be an enormous challenge over the 8 days, covering more than 1000kms over the Alps with well over 20,000 metres of climbing.
Frank who is a friend of a number of us and suffers from Kennedy's was hoping to complete the climbs with us on an electric assisted bike. Sadly his health has deteriorated and this is now not going to be possible.
About Kennedy’s
Kennedy's disease is an inherited motor neuron disease that affects males. It is one of a group of disorders called lower motor neuron disorders (which involve disruptions in the transmission of nerve cell signals in the brain to nerve cells in the brain stem and spinal cord).
The many symptoms of Kennedy’s disease generally first appear when the person is aged between 30 and 50 years old. Every case is different, but some form of physical disability will take hold. What starts with small trips and falls, can eventually lead to wheel chair confinement and full-time care.
Often symptoms begin with painful cramping and uncontrollable musclespasms. Over time the disease will attack most of the muscles often making it difficult to even swallow liquids.
Currently there is no known cure for Kennedy's disease. Treatment is symptomatic and supportive. Physical therapy and rehabilitation to slow muscle weakness and atrophy may prove helpful.
Please support this great cause if you can.....
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