The Brain is Where the Heart Lives

Liz Dawes is the founder and executive director of the RCD Foundation which was created in June 2013 in memory of her son Robert Connor Dawes (known to his family and friends as Connor). She is this week’s Changemaker.

While still grieving from the loss of her 18-year-old son Connor to pediatric brain cancer, Liz Dawes decided to sell her business and establish a foundation in his honour.

The RCD Foundation, “inspired by a big heart and brain”, aims to battle brain tumours and support brain matters in the areas of research, care and development.

The foundation’s annual event Connor’s Run, which takes place on Melbourne’s foreshore and follows the track Connor ran for rowing training prior to being diagnosed, has become the largest single event for paediatric brain cancer in Australia.

The foundation has also engaged more than 20,000 young people in Australia and the US through Brain Week, Go Grey in May Day, football leagues, school partnerships and Ergo challenges to fundraise for lifesaving brain projects.

Dawes, who was previously the founder and director of the creative fundraising business Art By Kids, has become a key figure in the field and has built a legacy for her son who she describes as a “bright and gorgeous young man who had his life snatched from him”.

“He was so clever and interesting and I miss that,” she said.

“I feel like my life is not as interesting, because he was a very clever person who looked at things in a very different way.”

In this week’s Changemaker she talks about why Connor was such an inspiration, the pressure to put her money where her mouth is and the meaning of eternal strength.

Why did you choose to set up the Robert Connor Dawes (RCD) Foundation?

So our son passed away and it felt, I don’t know how else to describe it, it just felt like a natural thing to do.

When he was living and rehabbing, he was very, very bright and he was always going to university, well that was the plan, he was accepted to Stanford to summer school just before his brain cancer surgery. After his brain cancer diagnosis, obviously his life, it was literally a 180 turn. So the life he was going to have even if he were living, because he lost his short-term memory, so he was a brilliant student and lost his short-term memory and he also lost his right side movement so he had very severe deficits so even if he had survived the brain cancer, and doctors didn’t think his long-term prognosis was good but some people live five years, 10 years, it’s sort of you don’t know, so obviously we wanted to make the most of that. And I said to Connor, why don’t we start a foundation, because you are really inspiring to people, and he was lying on our sofa, tired as he always was, and said “I don’t feel very inspiring”, but he was inspiring.

So sort of two things happened. After he passed away I thought I did want to start a foundation in his name, I wasn’t sure what that was going to look like. Somebody suggested we needed a big event because in our community there had been a lot of support for Connor, at his school, at his sister’s school, in the Bayside area that we live in, and his brother said: “Let’s do Connors training run,” which is a run that Connor did, right before he was diagnosed, he ran from our house in Sandringham to the Mercantile boatsheds, training for rowing. And it was actually uncharacteristic, because although he loved rowing, he hated running. As soon as our son Nick said that, the sort of light said: “Yes let’s do it,” but again we had zero experience in running an event like that, zero. It would be like if someone said to you today: “Ok, plan a run.” Ok. No idea. So I just started asking.

I found a gentleman who at that time ran Super Sprint, who run events in Melbourne, he went to Brighton Grammar where my son went, his kids went to Brighton Grammar, so he said: “Yes, I’ll help you.” and he gave us a lot of great advice. And he said: “You are going to need the three councils to agree because running from Sandringham to the boat sheds, you are going through three councils,” and our son ran along the Nepean Highway and he said: “No, you really need to run along the beach, obviously you don’t want to have traffic, cars and runners don’t mix,” so he gave us some really great advice. And I literally went about figuring out how to do Connor’s Run and the run he did and amazingly all three councils had the day we were interested in, he did the run in September, so that’s when we wanted to do it, and obviously compete with school holidays. So that run in its first year, we wanted 500 people and we cut it off at 1,000. We still run along the beach path, now we’ve kept it to 4,000 and then really in its second year it had already become the biggest event for children with brain cancer.

Did you expect Connor’s Run would become so successful?

No! What I learned with that, which has been a  really massive lesson, is it’s very genuine. So I think that it’s a real story, we have not made Connor up, he was a real, gorgeous young man who had his life snatched from him by a cruel disease, that was of no fault of anyone’s, it’s just something really unfortunate that happened. And it is a run that he did trying to be the best he could be. That was the other part of Connor’s story, he was never the best rower, he just wanted to be the best that he could be and he was trying to get into the first eight. It’s resonated. It has just touched people. And it is a beautiful run. And it is 18 kilometres.

So the other thing that happened, he passed away when he was 18.8 years old and when we, my husband and I, got on our bikes and biked the course with a pedometer to see how long it was, we came up with 18.8 kilometres and we’re like: “Ok, how do we make something of that?” and then we figured out, that’s how long Connor’s life was, which is weird, but it just worked out.

This gentleman, David Hansen from Super Sprint, who was really fantastic. At every turn we could call him and say: “What should we do about this, what should we do about that?” He came from all the experience where we had none, but we were really hard working. He said: “You’re going to need a shorter distance as well, you might want to consider that,” so we added the botanic gardens and we decided to do Connor’s birthday so that distance is 9.6 kilometres.

So what’s happened is it’s been a bit of a journey. This will be our fifth year in September, and every year it has gotten bigger and we’ve raised more money and now we’ve said every year we have the biggest event for pediatric brain cancer in the county.

And I think of that in two ways: great, that we’ve been able to do it, but we’re not raising millions of dollars through our event, last year we raised $600,000 which is significant, the first year we raised $100,000. So we’ve had a massive increase and I think we’ll sort of level off, you know there will be a natural area of the amount that seems right for the event and I think that we’ll sort of keep it there, we’re not going to try and grow exponentially every year, I don’t want to put that pressure on us and I just don’t think it’s realistic. But I also keep saying: “Ok, we’ve got the biggest event,” so the other thing in the back of my mind is, if we have the biggest event then we need to be having the biggest impact. So in my mind it was put your money where your mouth is. You’re saying you’ve got the biggest event.

So while all of Connor’s Run is going on, I’ve spent the last several years literally scouring the globe because I feel very strongly and this is just understanding what is happening in Australia for kids with brain cancer, who is making the decisions, what research is happening, and where, and is that collaborating overseas and who is it collaborating with and what is happening overseas. So a few years ago I went on a trip overseas and asked the doctors here in Australia, who’s doing the most research in the world and where are they and what are they doing. And they were very open, it is a nice community… for the brain cancer community of professionals, so they all know each other, they meet every year, they go to conferences, they talk about the research that’s out there. So they gave me the three that they felt were significant. One was a gentleman in Canada, one was St Jude’s and then there was another research place that we went to in Denver, because I was visiting the US. And that was very enlightening, just to understand, because also raising money you feel a big responsibility, well I do, that if we’re raising it, we want to do right by it, but also I don’t want to just give it away to things that aren’t going to be important. And that was one of the advices that one of the gentleman, who is now the head of Cambridge Oncology, his name is Dr Richard Gilbertson, he said to me: “Just make sure that whatever you’re investing in in Australia, is going to be part of a global solution.”

What are the organisation’s current priorities?

So with that, I’ve asked what should Australia be doing, I’ve asked the Australian doctors what should we be doing. There is a group in Australia called ANZCHOG, Australian and New Zealand Children’s Haematology/Oncology Group, and it’s a group that was started 10 years or so ago by professionals who give care to children with either a blood disease of a cancer. There’s a sub committee of ANZCHOG that looks after the brain, so if there is any clinical trials that are going to happen in Australia or New Zealand, it will go through this group. So I now know them all, again it is a sort of a small community, but they are doctors representing hospitals across the country and in New Zealand. So there is a project that they very much want to do in this country. We’ve come up with the name Aim Brain Profiling, and it is basically molecular diagnostic testing of tumours. So that’s happening overseas but it is not happening in Australia so there has been a  massive advancement in understanding of human diseases because of the human genome project, so it is all part of that but this specifically relates to children with brain cancer. So if a child is diagnosed today in Australia, the Australian ANZCHOG has an agreement with a hospital in Heidelberg, Germany, with one of the leaders in this area to send the testing for them to test.

So for the next four years our charity is investing, we’ve committed to $1 million but we’re going to try and come up with the other $1 million that we are going to help bring this testing to Australia. So it will benefit every single child whose diagnosed.

In the first two years the testing will be sent to Germany, because they are established and it will begin here but the results won’t be used but they’ll be compared. And then the second two years will be the testing happening here, in partnership with Germany.

So it really is bringing research to the country that otherwise hasn’t been here and then that research will give an absolute understanding of the child’s tumour and then because Australia will be part of it, there is a group globally that agrees how this tumour will be treated. And so it is very exciting. I don’t want to say brain cancer is exciting but this is [putting Australia on the global map] or making it a bigger part of it. The only reason they weren’t before is because they didn’t have the money to fund it.

You were awarded  2015 Bayside Citizen of the Year, how does it feel to be recognised for the work you are doing?

I’m sort of not doing it for that reason. I suppose when something like that happens I just think: “Oh, this is good for our charity.” I’m not doing this for myself of course, I am doing this to create a legacy for our son whose life was snatched from him. And that has seemed, I don’t want to say easier, but I don’t feel like I’m working.

That’s the other part of this. I do this pretty much all day, full time, 24/7, but it feels satisfying. It doesn’t feel sad, that’s the other thing people think: “This is so sad,” and it is a terribly horrible thing that has happened but it has given me, and our family, and our friends, and his school, it has sort of given everybody a really positive way to do good work, in his name. And I didn’t know when Connor was unwell, what was being done or not being done, in terms of this space, because he was not well and I was too worried about that, that was the priority. I guess we tried not to compete with other charities, we’ve tried to partner with them where we can.

That’s the other thing, I’m not interested in competing with like-minded charities, we’re all trying to do good work in this area. So i’m just trying to carve out our own way that we can make a difference.

Through your work what is your ultimate goal?

Well, we also have our charity in the US. I mean, the ultimate, ultimate, goal would be to help researchers work faster. Be able to do more work. We’re never going to stop young children, they are going to get brain tumours, I don’t know how, I feel that… but once they get them, we were told: “There’s nothing we can do for your son, we are sorry, he will die from this disease,” and that’s a terrible thing to hear, especially in this day and age when they can get man to the moon and they can cure all these other terrible things, why can’t they cure something that’s so unfair to small children. I don’t know if I’ve mentioned it, it is the number one cancer killer in this country. It is rare. I say that and people worry about their own, it would be rare to get one, but if you do get one it is not great. Because leukemia, also not great to get, but 90 per cent of children diagnosed with leukemia will live. So they have made tremendous strides in the last 40 years, but they haven’t made those strides against brain cancers. So I also feel that it’s pediatric brain cancer’s turn.

How do you find the time for you?

I like ideas, I like what we’re creating. Connor left us with a lot of material. I said he was bright.

The events that we have, we have Brain Week in May, which is where we engage high schools around the country, obviously there is more in the country because we are here, but we engaged them in something called Brain Week and it culminates with Go Grey in May Day, which this year is 5 May. There’ll be thousands of students across Victoria, and the country taking part, and the whole point is yes they raise a bit of money at school but they’re raising awareness which is fantastic. Because it is really their disease, their cancer… You know everybody hears talk about cancer, but it really tends to happen to people as they get older, but the whole point of Brain Week, is to create a sense of fun around brain activities. So Connor had Pi memorised to 100 digits. He loved spelling, he never spelled a word wrong. He loved Sudoku. He loved riddles. He love Rubik’s cubes. So we tried to get schools to create a sense of fun around all those activities and so it is really just sort of celebrating what a healthy brain can do, while raising awareness about something that’s so cruel. So that in and of itself has been amazing. What we’ve done there that has been incredible is we’ve just engaged with the school. This is our fourth year and every year again they are getting it, they are getting the idea of what we’re trying to do. That’s fun.

We found that the world champion Rubik’s cube holder lives in Melbourne. His name is Feliks Zemdegs, he has 100,000 followers on YouTube. He’s a sensation. He has come on as an ambassador.

So talking about being genuine. Someone said early on about getting ambassadors because we’re not well known, we’re not famous athletes. Connor wasn’t a famous celebrity or sport’s person. So we’re not bringing that into the story. So I asked James Tomkins, who was Australia’s most medalled, successful rower, who I think competed in five Olympics. So he’s come on as an ambassador. People have been really incredible. Connor played rugby, so we asked Melbourne Rebels, he’s now actually an Australian Wallaby, Sean McMahon, he’s an ambassador. We offer music therapy, because Connor has music therapy and he loved music, so we have a music therapy referral program around the country and we have Lisa McCune, who lives locally, come on as an ambassador.

So I feel like I enjoy that, I enjoy reaching out to these people who are connected to Connor, didn’t know him but there is a common something there. So it has been a massive learning curve but I just try to be genuine to him but also thinking very big about what we want to do, within Australia but also globally as well.

Do you have a favourite saying?

We have two. Connor loved Latin, which probably is no surprise now I’ve told you about him. So we have a phrase, that actually the kids at his school, we brainstormed and came up with it with Connor: Aeternum, means eternal, and Fortis means strength, so Aeternum Fortis. So that has resonated with us.

And then the other one that we love and that we use quite a lot is: “The brain is where the heart lives, so give a little heart for the brain.” If you think about it… everything is in the brain, all of our emotions, everything. So we do try to focus on that as part of our message. Brain cancer at its core is scary and complicated and difficult to even pronounce the word, so really just trying to very simply say: “The brain is where the heart lives, give a little heart for the brain.”