A couple of posts ago, I wrote about my son's recent school camp and how it was noticeably more difficult for him this year, than last year. As I concluded that post, I wrote the following final paragraph:
I'm not sure if I can keep watching what this condition is doing to my son. So I'm going to make a difference for these boys. I'm going to run a fundraiser this year to raise money to help them. I was originally planning on using it to use for research grants for a cure, but I'm thinking that now, maybe I'll use it for something else. Either an inclusive campsite or for research and development of a better mobility aid. Don't laugh, but I'm thinking of some sort of exoskeleton that will aid with standing and walking that can be used instead of a wheelchair. Or, if I can raise enough, all three.
To be honest, I've been thinking about running this fundraiser for quite some time now, and I've been slowly getting some things ready and formulating my ideas as best I can. The camp helped to focus my attention and provided the clarity and purpose I now feel. My original intention was to launch this idea back i February. It was my birthday, and people were asking what I wanted, and all I really want for my birthday, or Christmas, or any other 'special' occasion now, is a cure. For Duchenne muscular dystrophy (DMD) to be eradicated. But I didn't launch it then because I was scared of how the idea would be received and I guess, even more afraid of failing and not reaching the target that I've set. Since the camp, I guess I've been turned around on those feelings. Anything is better than nothing, and as they say, the only real failure is the failure to act. (I don't know if 'they' actually say that, but it sounds kind of good!) Added to all of this, his school was recently turned down for a grant to build an inclusive playground that, while for every student who attends this school, will make for a place where my son can be included.
So here I am, humbly launching my idea for a fundraiser that will hopefully raise a great deal of awareness around DMD, and if we're lucky, we'll raise some money too! I'll lay out my ideas as best I can, and hopefully you'll be able to make sense of my vision. It's crystal clear to me, and I hope that by the end of this post, you'll see my idea with the same of the clarity I do.
I'd like to raise $1 million to be used to fund the building of inclusive playgrounds. (You’ll note I said playgrounds!) that will be administered by a charity called 79 Exons. In return for people's donations, I'm going to walk 79 kilometres on 7/9 (September 7th).
The aim of this event is to primarily raise awareness. Funds will be a by-product and I've structured this event around the idea of spreading the word rather than making a cash grab from the richest companies and people. To ensure that as many people as possible hear about DMD - what it is and the devastating effects is has, I've structured the giving side of this in a relatively unique manner. There are two simple things I'd like to ask people to do.
The 'official', well, official-ish, event logo!
I'm hoping that this event will be something that is accessible to everyone, regardless of age, location, creed, or anything else. I don't want there to be barriers for anyone who wants to get involved in helping to spread the word about DMD. For this to happen, I'd like to only ask anyone who wants to donate for $1. That's right, just one single dollar. There are many reasons for this seemingly insignificant amount. Can we unpack them for a second?
Once someone has given $1, it would be fantastic if they could spread this opportunity to as many of their friends with the aim of finding twelve others who would be willing to replicate this process - donate one dollar and find twelve more people, and so on. (Yes, I understand that this sounds very much like multi-level marketing (pyramid scheme), and while it has similarities, I don't believe it's the same. There's no selling or forcing friends to become business partners. Just sharing a link on social media and forgetting it.)
Following this model, we only need to have people accept the invitation to six levels deep (yes, again, I'm aware of how pyramid scheme this sounds) and we've spread awareness to over 3.2 million people, and raised well over my goal. I know that it sounds like an insurmountable idea, but I think it's totally something that can be done/ I'll start with the first dollar and find twelve friends and before we know it, there'll be $13 and then when they replicate the process, we'll already have $157. Check out the diagram below to see my real basic maths skills!
My rudimentary breakdown of how this could work
I think that covers off the main parts of my idea. I've devised some frequently asked questions that I think people will often ask. Hopefully they will answer any questions anyone has, and if they don't then I've created a server on Discord (link to this is below) and a Facebook group.
But for now, some FAQ's!
Why 79 Kilometres?
There are two reasons why I’m choosing 79km as my goal. The first is because 79 is a key figure when discussing DMD. It’s the number of exons found in the dystrophin gene, the largest known human gene. A mutation on this gene causes DMD.
The other reason is that I’ve never exercised for anywhere near that distance in one shot before. It’s going to be a very big strain on my muscles and I’m going to need to exert more energy and effort to move as I progress through the challenge. Every day, as they complete tasks that are generally taken for granted, people with DMD exert at least 30% more energy than healthy people, so through this experience, I hope to gain somewhat of a small understanding of what people who have DMD live with.
Why 7th of September (7/9)?
Well, in the first instance, as with the reason for choosing 79km for the distance, there is the significance of 7 and 9 in the lives of people with DMD. The other reason is that the 7th of September is World Duchenne Awareness Day, and what better day to raise awareness and funds than on a day when the global Duchenne community is already striving to being attention to this rare condition?
Can I donate more than $1?
Certainly. In fact, be my guest! I won’t stop anyone from donating whatever they feel led to give, but there is absolutely no compulsion to give any more than $1. (Please don’t forget the fundraising platform I’m using take a minimum $2 donation, but I don’t want to change my model - hopefully by next year, I’ll be able to build my own platform that will work as I want it to.)
How will the school get the funds?
I’m fundraising on behalf of a small South Australian charity called 79 Exons. Everything that is donated through the online platform is deposited into their bank account, and the after the event, the charity will release the funds to the school, which has already committed to building the playground - they’re just awaiting the money to do it. Regular updates will be made so that anyone who donates can see where their money has gone.
What if I can't find 12 people?
‘I’d rather donate $20 and not find twelve people. That’s more than would’ve been donated if I had’ve found twelve.’
I’ve already been presented with this view, and there’s no right or wrong way to help out. Personally, I love the idea of including as many people as possible in this idea because more than raising money, we’re trying to raise awareness. But if you can’t find 12 people to donate, or aren’t interested in ‘bothering’ anyone you know, then any donation you give will be greatly appreciated. Remember, that if you choose to donate only, you’re not obliged to give more than the requested $1. But, again, anything you give will be welcome.
How do I donate?
Head over to my fundraising page, here Steve’s Fundraising Paage and click on the blue ‘Give Now’ button. (During the process, the platform requests a $1 tip because they do not take fees. If you don’t want to pay this, click ‘Choose custom amount’ and change the tip to $0, before proceeding.)
I've donated, what do I do now?
Give yourself a pat on the back, then head on over to the Discord server, or the Facebook Group where you can join a community of fundraisers and help to raise awareness of DMD and just generally have a great time.
