Story

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!

Raising money for

Motor Neurone Disease Association

Motor Neurone Disease Association

Charity Registration No. 294354

The MND Association is the only national charity in England, Wales and Northern Ireland dedicated to improve care and support for people affected by MND, fund and promote research, and campaign and raise awareness so the needs of people with MND are addressed by society. Visit www.mndassociation.org

Donations 314

Great effort Cam!

Donation by Tim Mardon on 28/08/13

£50.00

+ £12.50 Gift Aid

Amazing achievement and result!!!!!

Donation by Rachael Shaw on 23/08/13

£30.00

+ £7.50 Gift Aid

Bravo...better late than never with the donation!

Donation by Mandy Laycock on 19/08/13

£20.00

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Well done Cam and the team

Donation by Marie Main on 19/08/13

£50.00

+ £12.50 Gift Aid

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Lucky last...

Donation by James Edwards on 16/08/13

£25.00

Nonstop, hope it all went ok and you can update us on next skiing trip if not before. Regards, Peter

Donation by Peter Caffin on 14/08/13

£20.00

+ £5.00 Gift Aid

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Well done all of you. Great sum raised. My donation is to support Ben Wallace and a very worthwhile cause

Donation by George Ritchie on 08/08/13

£50.00

+ £12.50 Gift Aid

Donation by Heather S on 08/08/13

£10.00

Donation by Juliet and Tom on 08/08/13

£10.00

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great effort fella's

Donation by guy robinson on 07/08/13

£50.00

+ £12.50 Gift Aid

Brilliant effort everyone.. well done. When do you cycle back?

Donation by Gordon & Christelle on 07/08/13

£50.00

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well done frawls and jodie,chapeau

Donation by jon taylor on 07/08/13

£50.00

+ £12.50 Gift Aid

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Carters, Jose and Cam - Congrats on completing a challenge of a life time. Fantastic effort.

Donation by Schooner Professional Ltd on 05/08/13

£50.00

+ £12.50 Gift Aid

A seriously great effort. Well done.

Donation by Gordon Hunter on 05/08/13

£25.00

+ £6.25 Gift Aid

Good luck to you all! Have a great ride ! With our best wishes.

Donation by Trevor & Caroline Craig on 03/08/13

£20.00

+ £5.00 Gift Aid

A fantastic effort for a great cause - well done all of you.

Donation by Euan and Hannah on 02/08/13

£50.00

+ £12.50 Gift Aid

Good riding Kiwi team and congratulations on the feat. James, Daniel and Mark from London and Devonshire Trust

Donation by Anonymous on 02/08/13

£250.00

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Well done Will - great achievement !

Donation by Polly on 01/08/13

£10.00

+ £2.50 Gift Aid

Donation by Anonymous on 01/08/13

£20.00

+ £5.00 Gift Aid

Awesome effort guys!!! Well done

Donation by Rachel and Dewey on 01/08/13

£40.00

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Sterling effort Ben et al.

Donation by Graeme & Kerena on 31/07/13

£20.00

Well done Andrew and friends for completing such and arduous challenge

Donation by Brian & Kay Friend on 31/07/13

£20.00

+ £5.00 Gift Aid

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Andrew - One day you'll have to tell us what you really did during a week away from the family, cos I can't believe you did such an insane bike ride.

Donation by Charles Brooke on 31/07/13

$50.00

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Ben and the guys - huge congratulations on completing such a gruelling challenge & raising an amazing amount for a great cause.

Donation by Chris, Anna, Jame and Isla Vaughan on 30/07/13

£30.00

+ £7.50 Gift Aid

well done that man.

Donation by Pat and brian on 30/07/13

£30.00

+ £7.50 Gift Aid

Donation summary

  • * Online donations£14,452.58
  • Offline donations£5,913.90
  • Text donations£0.00
  • Total raised£20,366.48
  • Gift Aid£2,587.50

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