Moving Mountains For The Orphans of the Health Care System

Steve Waugh is a former Australian cricket captain and the founder of the Steve Waugh Foundation, which supports children and young adults with rare diseases. He is this week’s Changemaker.

Waugh is world renowned for his sporting achievements. An Aussie cricket legend, he is one of only three Australians to have been invited to join the prestigious Laureus World Sports Academy.

Since hanging up his baggy green, he has made a commitment to philanthropy and the not-for-profit sector.

Through his work with the Steve Waugh Foundation, which has supported over 600 families since it was established in 2005, he announced the launch of the world’s first self-propelled children’s bicycle.

The self-driving bike has now joined Waugh as he leads a group of 70 riders travelling 701 kilometres from Mittagong to the peak of Australia, Mt Kosciuszko, over the course of six days.

The Captain’s Ride raises funds for the 400,000 children throughout Australia affected by rare diseases, while the Riderless Bike will give the children an opportunity to experience the ride first hand thanks to a 360 camera mounted to the seat.

Waugh said when choosing which route the ride would take, he wanted the one that posed the greatest challenge topographically to match the demands these children face each day.

In this week’s Changemaker he talks about making the move from sport to the not-for-profit sector, why rare disease patients are the orphans of the health care system and the challenge of cycling Australia’s highest mountain.

You’re the former captain of the Australian Cricket Team and one of Australia’s greatest sporting heroes, how did you make the transition from sport to the not-for-profit sector?

It wasn’t a sudden transition because I had been doing a bit of charity work while I was playing. I was involved with raising money for Udayan, which is a rehabilitation centre for kids who either suffer from leprosy or their parents have leprosy in India, so that’s been 17 years I’ve been involved in that. And I was also part of, and I’m still part of, the Laureus Sport for Good Foundation which does global projects using sport as a tool for social change, so that’s something I’ve been doing. And then the foundation started when I retired from cricket in Australia. So it has sort of been a gradual process, not a sudden change and I’ve always sort of been involved in it in some way.

What are the current priorities for the Steve Waugh Foundation?

The priority is always the same. To make a real and genuine and authentic change and difference to the lives of peoples suffering from rare diseases. We want really positive outcomes that make a difference rather than just raising money and hoping we are going to make a difference, we support children and their families long term. It is a holistic approach, it’s not just a one off, so a lot of the kids we know personally and have supported between five and 10 years.

And obviously we want to raise awareness for rare diseases, it is often the orphan of the health system, forgotten by the government and not catered for by other charities so they really are left to themselves. So we try to give them a voice.

We get involved in World Rare Disease Day. We have an event called Rare Star Day, which we are one of the leading players in… so there is a number of other things we do. But really it is to raise awareness for rare diseases and raise funds.

What is the aim of the Captain’s Ride

It’s limited to 70 riders, so it is invite only. The ride is about obviously raising awareness and funds for the foundation but at the same time we want it to be a leadership week for the people who come along on the ride. So each night we will have an inspirational speaker, we’re going to have Anna Meares talking one night and then we’ll have Adam Goodes on another night, Matthew Hayden and Daley Thompson all coming along, plus a couple of surprise guests later on who are really inspirational Australians who will talk about getting through the difficult times because the last couple of days are going to be extremely tough, a lot of climbing and it will test people to the maximum both physically and mentally.

So it’s about a life experience for the riders, about them getting to know themselves better and put themselves in position they thought they’d never be in, but really importantly it is about supporting the kids and families with rare disease, getting to know what the foundation does and to learn about these stories.

A lot of the kids will be motivating us at nighttime, they will be sending messages of support and to inspire the riders at night time which happened last year and that was really touching for a lot of people who were struggling to get through and then they saw a message from a kid with a rare disease and it really motivated them to do well. So there is a lot of objectives for the week, camaraderie, fun, I guess doing something to improve the lives of others has got to be the motivating force.

What has the training been like in preparing for a ride up Australia’s highest mountain?

When you put it that way it doesn’t sound good, does it? It’s been pretty hard. Last year I took on the ride and I helped create the ride without really knowing what I was getting into. I got a bit of a rude shock on the first day and it was six of the hardest days of my life last year. And I thought well I’m doing it again next year, let’s be a little better prepared. So I’ve actually been working with a cycling coach, a guy called Martin Hoyle, and we’ve been doing a lot of sessions, early morning 5 or 5.30 in the morning, pretty intense sessions and then we’ve been doing some longer rides so I think I’m better prepared. But having said that I know what’s going to confront me and it’s the last couple of days are going to be extremely tough and we’re going to have to help each other to get through.

Who or what inspires you in your work?

It just sort of found me, a bit like when you go in a bookstore and the book finds you. But I’ve always been interested in supporting people who struggle against the odds. I know I’ve got a fortunate life and I think that came into clearer perspective when I toured the subcontinents and I saw the way a lot of people live there so I tried to help out over there and then in Australia I saw the need to support kids who were really struggling, who showed enormous courage and character against the odds. I really value those traits. And I guess one thing lead to another and all of a sudden, I’ve set up a charity and then you want it to become the best it can possibly be so you are endlessly trying to make it better and improve. It’s a continual challenge.

Do you have a favourite saying?

Lots of different things I suppose. The one I used in cricket all the time and the one I sort of live by is: “Attitudes are contagious, is your’s worth catching.”

The Captain’s Ride is taking place 29 October to 3 November from Bowral to Mt. Kosciuszko. Find out more here.