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5.3.2010 |
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Request for teeth |
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27.1.2010 |
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Financial Support to keep the Information centre – A Plea from the heart |
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17.11.2009 |
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3rd AKU conference in Siena |
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12.8.2009 |
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Clinical evaluation programme |
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10.6.2009 |
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EU health ministers tackle rare diseases |
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12.5.2009 |
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Blue Badge holders UK road atlas |
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26.2.2009 |
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Call to develop national plan for treatment of rare diseases |
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27.1.2009 |
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Tissue donation |
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Major AKU fundraising achievements by our top cyclist volunteers!
Dear AKU friends,
We've had some pretty amazing volunteer fundraising going on over the past few months, in particular from cycling enthusiasts who've cycled hundreds of miles to raise funds for the AKU Society.
In May, Maurice, grand-father of my two little boys who have AKU, cycled with his friends Bob, Matt, Rachael, Brian, Ed, Gary, Meirion and Chris from Paris to London, raising thousands of pounds for the AKU Society. Despite the wind and the rain that battered them for days, they successfully completed the trip and raised awareness about AKU.
Overall, they cycled 300 miles over five days. To quote Chris before the race: 'This is going to be quite a trip - the average age of our group is about 50 so it will be a major achievement for us all to make it from Paris to London!'
This was the culmination of months of preparation and training, as well as a series of smaller fundraising events such as a day at the dog races or a birthday party with donations to the AKU Society instead of birthday presents.
Meanwhile, Tom, an old friend who I've known for nearly 30 years, raised thousands of pounds by cycling the Etape du Tour, a cycle ride held every year over the exact route of a mountain stage of the Tour de France. It is open to 7,500 amateur riders and takes place while the actual pro race is under way (the pros usually reach the Etape stage about a week after the amateurs). This year's 165km (102mile) stage in the Pyrenees was a classic, taking in the monster pass of the Col du Tourmalet at 2115m and the brutal Hautacam climb. To spice things up, riders have to travel at a minimum average speed of 18km/h or get eliminated.
Says Tom: 'I'm happy to say that I completed the course, crossing the line in 9h28mins - a bit slower than I was hoping but ahead of the broom wagon which follows the race at the minimum pace. By all accounts, the weather was the worst anyone can remember for the Etape. It rained steadily from the moment we arrived at the starting pens and temperatures were barely above freezing at the top of the cols meaning the 30km descent from the Col du Tourmalet, which should have been the highlight of the day, was in fact a recipe for hypothermia.
'The climbs were steep, long and relentless and at the top of the first col (Tourmalet), I couldn't possibly imagine how I would be able to climb the second (Hautacam). The last two hours seemed impossibly long and at 5km to the finish I had to stop and figure out how I was going to summon up the strength to keep going. The secret had been explained to me by a man as we both rested at the top of the Tourmalet. He said just remember it's not 165km, it's 1km, 165 times - forget what came before and what's coming next. He had only one leg which put my efforts into perspective!
'Today, Monday, the pros take on the same stage that we rode last week. Apparently, they're expected to finish in under 5 hours. I'm looking forward to watching the highlights from an armchair, with a cold beer or two!'
Thank you so much to Maurice, Matt, Bob, Tom and everyone else for raising all these funds for urgently-needed medical research for AKU.
If you're interested in doing a sponsored event for AKU, please do email me at nick@sireau.net.
If you didn't get a chance to donate and sponsor them, you still can at:
Maurice: http://www.justgiving.com/mauricejamesbigbikeride
Matt: http://www.justgiving.com/matthewsmith3
Rachael: http://www.justgiving.com/rachaelbell
Chris: http://www.justgiving.com/chrisbumstead
Tom: http://www.justgiving.com/tomuhart
All the best,
Nick
Chairman
AKU Society
www.alkaptonuria.info
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