Folks,

Most of you will have been following the thread I've set up regarding my rare cancer. The last few months have given me the opportunity to think about what we regard as important in life; health, opportunity, happiness etc. My cancer is a burden, but also maybe an opportunity. From speaking to a variety of sources, I've found that there is research about sarcoma, but not enough to effectively impact it and the survival rates amongst those it affects. Its almost like the cancer affects so few people proportinally that it doesn't attract the finances needed to research it. I look at newsletters when I go to the Marsden for my treatment, full of beautiful vibrant young people whose live's have been taken by this spiteful disease, and the effect on those it leaves behind; spouses, children, family and friends.

I am supposed to be dead. Those following my original thread will be aware of the statistics for survival, and I should have died around October. I've decided that, instead of rolling over and dying, I'm going to do all I can to raise awareness, in order to support those with sarcoma, provide funding for research, and increase opportunities for children with sarcoma to experience the fun and laughter that all kids should be able to on a daily basis.

I'm setting up a charitable foundation that will feed money into Sarcoma UK, and hope to raise money through sponsorship, corporate and charitable. Meg and I have talked about this, and its something that's important to both of us. Truth be told, I'm not sure how to start, and wondered if anyone on here has any experience when it comes to this sort of thing? I have very little in the way of skills; at best, I'm tenacious and willing to camp outside peoples doors to get things done, but also accept that this isn't always the way things are done. I intend to do the following things;

1) Set up a charitable foundation
2) Sort out a website
3) Get corporate sponsorship through a high-profile sustained media campaign
4) Establish and participate in continual money-raising activities.

I know that it might sound unrealistic, but its the only way. I intend to have a go at LEJOG on a tandem this year, and then hopefully C2C in the US in 2011. I figure that I can raise interest by utilising the media, and corporate sponsors by wearing/eating/riding the right products and demonstrating their 'positive social/corporate images'. But the rest of it is a bit of a blur, and I'm at pains to admit it, but you lot are probably the most knowledgeable guys and girls I've had the fortune to converse with.

Any ideas? By the way, I'm going to call it 'The Bullheart Foundation'…

Cheers,

Mark

I can't help with the start-ups but let me know when you get it going and put me down for a couple of quid in donations.

you sir, are amazing !!

keep it up!

nice one mark – i have some experience of raising funds and also marketing this kind of venture. there is new one avenue for raising revenues i'm happy to discuss with you. email in profile.

For 1 & 2, my advice would be to speak to people who've done it already. Maybe start with Janes Appeal? http://www.janesappeal.com/contact.html

Good luck!

ive got no experience of any of the stuff above but ive got a bikeshop so could maybe help with kit??
drop me a mail if you want

Hi Mark,
I've been silently following your other thread and must say you are one truely amazing courageous person.
This might be a really stupid thought but have you thought about maybe writing to Lance Armstrong/ Livestrong? You never know, he might be able to offer some advice about charity run events!!

My personal view is that you should consider joining an existing organisation rather than starting a new one.

You clearly have a lot of drive and enthusiasm but, as you say, lack a clear understanding of what to do to channel it.

Workign within an existing charity will mean that they will have a clear set of goals, outlets for cash raised that are known to work etc. You'd clearly need to make sure that their goals are closely aligned with yours first, though.

Hi Mark
An easy way to set up donation to an existing charity is through JustGiving – http://www.justgiving.com – you set up your own page, with an much info as you want to provide. People donating can also choose to leave a message. Some friends of mine set up a page when their son died in the summer, to raise money for cardiac risk in the young.
Take care
MrsT

At the risk of stating the bleedin' obvious; why haven't you died? If we could find out why, that would be an enormously helpful thing…

Pencil me in for a fiver when the site's up & running.

Your previous thread would interest a lot of people, not just those on STW. I am sure it is common to write a blog but the thread was two way and some of the replies were fascinating. Just a thougt tbut could there be moeny to be made out of publishing some, or aspects of the 'I think I'm about to ..' thread?

I do web and interactive stuff for a living Mark, drop me an email if you want any thoughts/suggestions etc

Have you had a look at http://www.fatcyclist.com/

Elden did a similar thing when his wife was diagnosed, hooking up with Livestrong and twinsix.

Start small just your local town and STW, as a company why would I sponsor you just because your cancer is rare, it does not make it more important than Lung Cancer, Alzheimer's or a child in Africa with HIV.

Two lads round my way whos parents both died to cancer put on a fun sports day plus disco thing once a year, with the backing of a friend who plays the lead in a west end musical they have made a good load of money.

Saying that I would try to contact get advice from Mr Armstrongs people, last but not least post up here when your up and running and I'll put my hands in my pockets. Good luck.

Hi ive been following your other thread but havent posted as never know what to say thats different to anyone else posts / feelings. Im sorry i cant help with setting charity up as know nothing about it however i am running the London Marathon on 25th Apr this year and thinking about raising money through sponsorship for a charity. If you can get it set up before 25th Apr then i would like to run for your charity.

I too have been silently following your (and Meg's) amazing and honest thread.

It's just a thought but is it better, perhaps, to become a champion for the Sarcoma Trust rather than setting up a seperate charitable trust?

there are lawyers that will help with the legal side of setting up a charitable foundation for free, i'll check with MrsMW, she set up a charitable company and found it invaluable, there are obviously quite stringent rules and regs to follow.

what Niknak said, fatcyclist is a good place to start, why not get intouch with the man himself? oh and put me down for a tenner. 🙂

I'm happy to provide webhosting free and although I'm a slightly lapsed programmer, can take care of some of that stuff as well.

Just an idea, is this something the singletrack mag could get behind too?

Blimey!

Thanks to you guys! I didn't really expect such an overwhelming response so soon, but the STW massive come through again!

The reason I want to start a foundation independantly of a registered charity such as Sarcoma UK is because I want the trustees of The Bullheart Foundation to have some control as to where the money raised actually goes. I know that there have been issues in the past with charities such as CAFOD using monies raised to pay 'extensive salary bonuses' to directors, managers etc. I'm not prepared for the hard word undertaken by myself, you lot and others to be undermined or misappropriated in this fashion. There are many parallels with Sarcoma UK's mission statement, and I'm sure that the funding we raise will benefit them entirely; I just know that there will be some areas we raise money for that won't be a priority for them.

I will be in touch with all you IT bods over the course of the next week, both to grovel and to offer thanks. I have very little idea as to how to set up and host a website, but thankfully some of you do! I have some ideas, but am not the most creative of folk…

Cycleworlduk – Thank you. I'll pop down your way, buy you a cup of tea and cake, and thank you in person.

Limy – Don't know what to say. I'm going to sort it, and then carry a water-bottle and a banana to each drinks station on the run! Thank you…

The Justgiving route is a good one, but I'm looking for something with more longevity that will operate and function like a sustainable charity-esque organisation.

tails – entirely valid point. I don't think that the cause I'm fighting for will be anymore important than those you've listed, but I also know that before I was diagnosed, I hadn't even heard of sarcoma, whereas the others I had. A fair amount of cash and awareness seems to be channelled into those causes. Plus I'm devilishly handsome; I can't think of any organisation that wouldn't want me as a poster-boy… 😉

I'm going to email Mr's Armstrong, Boardman, Hammond, Hoy, Fatcyclist, Sir Alan Sugar and James Martin too (!) and get them to help out. I'm hoping that my killer smile and witty conversation will pull 'em in.

More later,

Mark

I do web stuff as part of my day-job, I'd be glad to help out where necessary / if required. My email's in profile.

Cheers

Joe

Hi Mate very brave and hearty story
My skills maybe zero for you but please let me know as
can help with cash donation.
Best of luck mate and be strong.

Another silent follower with little in the the way of advice but certainly ready with a donation when it's up and running.

All the best.

Mark, haven't read all the other thread but am glad to hear you're very much still alive and kicking, my friend did the website below for a family friend and we rode JOGLE in 2008 to raise money.

http://www.emmasbubbletrust.org/new_site/website/

They are linked to the Teenage Cancer trust but are also a seperate entity I think, as you can see from the site they focus locally as has been mentioned and also nationally (appearing on Hollyoaks).

My mates name is Adam Lynch, he's a top guy and i'm sure if you contact him through the website he would be willing to give you some pointers.

Good luck

Rob