26 of us are cycling the infamous Route des Grandes Alpes in July 2013 to raise funds for Kennedy's Disease Raising Awareness (KDRA). A good friend of the ride's organisers, Frank, has been diagnosed with the disease - a rare, currently incurable and non-treatable neuro-muscular disease. Once the disease takes hold, the spinal and bulbar neurons are affected causing muscle weakness and wasting (atrophy) throughout the body. As the disease progresses, the motor neurons will begin to die and the muscles will waste away. It is a genetic disorder; generally, males with the inherited gene develop the symptoms, while females with it are usually the carriers.
Research into Kennedy's Disease is largely being carried out in the US, with the team in the UK very much in its infancy. So much so that KDRA is not yet a UK registered Charity - all donations will initially go to the MNDA, the Motor Neurone Disease Association. MNDA have agreed to work closely with KDRA and all funds will be transferred to them when this page closes. Unfortunately, at this stage, we are not able to claim Gift Aid.
The focus of the UK team is on increasing awareness and offering support and help for sufferers. It is important that KD is correctly diagnosed so that the chances of it being passed on are reduced, but it is a rare disorder (affecting 1 in 40,000) and therefore lacks the funding.
The ride itself is 700kms from the shores of Lake Geneva to Nice on the Mediterranean Coast, via the Alps, in 7 days. The route crosses 14 major cols, involving 19,180 metres of climbing. That's an average of 2,720 metres each day, equivalent to more than 2 ascents of Ben Nevis from sea level. Or more than 2 ascents of Everest during the week. The highest pass is the 48km climb up to Col de l'Iseran, at an altitude of 2,770 metres. At this height, there is only 73% of the oxygen available at sea-level. The expected energy consumption, per day, is 5,000 to 6,000 calories, compared to 3,250 calories for the average man running a marathon at sea level.
Donating through JustGiving is simple, fast and totally secure, so please dig deep and donate now. On behalf of Kennedy’s Disease Raising Awareness and the patients it supports, thank you again for your generosity!
