Pedaling for Muscular Dystrophy

Hugh and Ian after the ride, with Team Duchenne support: (from left): Amelie, Madison, Chelsea and Brennan

Bren gives Ian some tips for next year (starting with: 'try going faster...')

The brave face of victory: Hugh was unable to sit down for 24 hours...

Bren10 - Head Coach

Thanks for visiting the Team Duchenne fundraising page.

So why are three guys old enough to know better, dragging themselves out training in the wind and rain; to each go on a really long bike ride? And more importantly dear reader, why are we asking you to part with some of your hard-earned cash and support us?

Let us introduce you to Brennan.

Like most 7 year old boys, Brennan is crazy about Transformers and Ben 10 (his nickname is Bren 10); he loves riding his bike and having adventures with his sidekick, Tas (loyal fox terrier). He enjoys school, loves swimming and going to the beach; he is big-hearted, smart and much loved.
So, great! So what. Well, Brennan has Duchenne Muscular Dystrophy (DMD). For those who haven't heard of it, DMD is a disease that affects a child's voluntary muscles, starting in the legs (calves, thighs and pelvis), and gradually extending to other muscle groups. DMD affects mostly boys, and is usually diagnosed around 4 - 6 years old. DMD eventually affects all voluntary muscles, and the heart and breathing muscles. Survival is rare beyond the early 30s. There is no cure.

So what does this mean for Bren? Well at the moment, he can still walk up stairs on his own, and although he does have some terrible falls (he recently broke his arm in one) he gets around pretty well. Bren can't run - although he goes up on his toes and gives it a good go - and he relies on locking and unlocking his knees to descend slopes and steps. Despite this he is fearless when scampering around the rocks at the beach.
By age 10, Bren is likely to need braces to aid in walking, and most DMD boys are wheelchair dependent by age 12.

What does this mean for Brennan's mum and dad? Well, first there's the shock of finding that your busy, bright, cheerful little boy has a progressive, disabling and terminal condition. But beyond that it means travel (lots of visits to doctors and physios), equipment (special boots to sleep in, progressing to braces, wheelchairs and so on) and car and home modifications; ramps, lifts, doorway-widening and more...
This is where the Muscular Dystrophy Northern (MDN) really makes a difference. Muscular Dystrophy Fieldworkers do home based visits and provide information, equipment and support to families. Muscular Dystrophy Northern is currently able to provide one fieldworker to support affected families from Northland through to Taumarunui (big job!) - she liaises with other services to coordinate members' needs, attend multidisciplinary clinics and provide support where appropriate.

Good thing all this is supported by the government, right? Unfortunately not - MDN receives not a skerrick from the Ministry of Health or any other central funding body. Fundraisers (like this web page) are literally its lifeblood.

So if you whipped out your credit card and donated $100 right now (and that would be a really GOOD thing to do), how much of it would go to support families like Brennan's? Well, www.fundraiseonline.co.nz will charge a 5% fee ($5) to cover their processing costs, the government will want 12.5% of that 5% fee ($0.60), and the credit card company will want about 1.8% of the overall transaction ($1.80). So of your $100, Muscular Dystrophy Northern will see about $92.60. Which we think is pretty darn good.

So go on, generate some good karma and support muscular dystrophy. Whatever you can afford - you'll feel good about it for days, and kids like Brennan and their families will thank you for it.

Just click on one of the attractive 'make a donation' buttons. The process is totally secure, and if you live in New Zealand your donation is tax deductible - you'll receive a receipt you can use for your tax return.

Many thanks for your support.

About Team Duchenne

Team Duchenne is an elite group of highly trained professionals (unfortunately their collective professions don't include cycling). Ian Power, Hugh Griffin and Doug White; 3 names etched in the very fabric of achievement; 3 men who will laugh in the face of pain, tweak the ear of exhaustion and give saddle-soreness a brotherly knuckle-rub on the head. Especially Doug, as he's going around twice.

[Update] Oh horror - whilst competing in a 5 hour mountain-bike challenge, Doug has blown his knee! Luckily he has another one, but nevertheless this means that his Taupo Enduro ride is history, and mighty Team Duchenne is now down to two. Two men who will laugh in the face of pain, perhaps, but two men who will also whimper quietly at the loss of Doug. Especially Hugh, who must now carry the mantle of official team Hard-man (like Doug,he has completed full Iron-man events and suchlike) and will doubtless have to shave his legs.

[Update] Thanks and thanks again to everyone who has sponsored us so far. We are hugely grateful - it will really help on the day to know how much support we have! That even though we are cycling all day to end up back where we started, we are in fact helping things get just a little bit better.

[Update] Thank you and well done, Danny and the team at Ultimo Clothing in Wellington, (www.ultimoclothing.co.nz) who are designing and providing team shirts for Hugh, Ian and Brennan free of charge. Ultimo are the guys who provide custom clothing for Steve Gurney and other famous sporting professionals, so we'll have to up our game to do justice to the shirts!

[Update] Phew - job done! We did it!. Hugh lived up to expectations and despite not shaving his legs still completed the 160 kms in a blistering time of 5 hours and 1 minute. Ian lived up to his Captain Slow billing and came home 41 minutes after Hugh - but a good effort all round. Brennan and his mum and dad came all the way from Mangawhai to cheer us on, and spoiled us with a massage at the Hot Pools straight after the race - much appreciated! Thanks to the Team Duchenne support crew - Suzann, Amelie, Claire, Laurence, Chelsea and Madison, for helping make it such a special day.
Thank you to everyone who has sponsored us - we've been absolutely delighted by your generosity!