Welcome back to Leader Talk! In episode 29 we chatted to the amazing Lucy Jones, the Co-founder and President of Neuroblastoma Australia, helping raise awareness and fund research for children’s cancer, as every child deserves to express their right to grow healthily.
Lucy is recognised for her tireless work in raising awareness for neuroblastoma through the Westfield Local Heroes for Chatswood, and she was nominated for a 2020 Westfield Local Hero award. She works on behalf of the consumer and community committee for Sydney Children’s Hospital and Children’s Comprehensive Cancer Centre redevelopment project in Randwick.
Lucy is focused on driving change in neuroblastoma survival rates through fundraising and believes that research will give better treatments for devastating childhood cancer. In this talk, Lucy chats about the importance of resilience, why you need to find your purpose and why taking time for yourself is critical to a successful business.
Authored by Lucy Jones, Co-founder and President of Neuroblastoma Australia.
I lost my daughter, Sienna, to the childhood cancer Neuroblastoma when she was only two and a half years old. The journey I have been on since, isn’t something I would wish on anybody – but it has led me to where I am today, leading the not-for-profit charity, Neuroblastoma Australia.
Neuroblastoma is a rare and highly aggressive childhood cancer that has around a 50% survival rate if the tumour is aggressive. When Sienna was first diagnosed at nine months old, we had never heard of this disease before. It was a horrible weight on our shoulders as a terrible unknown was thrust upon us. One of the worst parts of Neuroblastoma is that the treatment options are very intense and painful. Quite often, even after the treatments, children continue to be admitted into hospital as their immune systems are so damaged. We experienced 61 admissions in 18 months. We lived at the hospital, lacked sleep, and lived on a knife edge every day. My whole being was about saving her.
Eleven months after Sienna went into remission, the doctors found another tumour. There is no cure for relapsed Neuroblastoma. We knew the survival rate was 0%. Yet we still searched for a cure. At only two and a half years old, sadly Sienna passed away.
As we continued to speak to the doctors throughout Sienna’s treatment, it was clear there was a large gap in knowledge about this cancer. It is pure random chance whether your child is diagnosed with Neuroblastoma; it’s a 1 in 100,000 chance. Yet, doctors and researchers have found only limited options to treating it effectively. The children have to go through so much intense and dreadful treatment to be saved and then half of them don’t survive. I felt like it really wasn’t good enough; it was unacceptable.
The idea that a childhood cancer had little to no research or funding felt unconscionable. Going back to corporate life after such an experience was not an option for me. I had already started fundraising when Sienna was diagnosed, shocked by the lack of knowledge and treatment options. So, I decided I needed to continue fundraising with the aim to keep getting bigger. I wanted people to know about it. I felt the need to tell people and educate them. The young children that are affected by this disease are often babies and toddlers who can’t speak for themselves. I thought, who will represent them? This powered me to develop my fundraising, which ultimately led to the creation of the charity, Neuroblastoma Australia.
Neuroblastoma Australia began small. It wasn’t the organisation it is today straight away, just like any small to medium business. The first fundraiser when Sienna was alive was just a small fun day and I held it when I realised the only way to do more for the children was to get more research funding into this area. It was a learning curve for me. I felt like a childhood cancer should have the most funding – I mean, children are dying – but it didn’t.
From that first fundraiser I did more. From sausage sizzles and fun days to gala dinners, we have done a range of events to raise money for research. It began as a group of friends called Sienna Hoffmann and Friends before we became the registered charity, Neuroblastoma Australia. I was helped by another family affected by Neuroblastoma, to formalise the organisation and this support from other families continues to this day. Today, our major fundraising event is the Run2Cure running event, which has taken place for the past 10 years. I am extremely proud of what we have achieved so far, and my team and I will continue to work tirelessly to help find a cure for Neuroblastoma.
Taking a leap of faith
It took a leap of faith for me to begin Neuroblastoma Australia. While in the beginning there were organic progressions for growth, to create a not-for-profit or any business requires you to take a risk. It can be difficult to decide in these moments. This is when you need to lean on your ‘why’. Understand your passion and the reasons behind why you are starting your business. This is what will help you decide whether the risk is worth it and in alignment with your goals and ambitions.
For me, there was always a sense of urgency behind the creation of Neuroblastoma Australia. Children are dying from this disease. My personality has always been to ask myself – what can I do? From there, each event I created just got bigger and bigger until the leap of faith of setting up a real charity organisation presented itself to me.
While it is still sensible to plan and be meticulous about growing your business, there are moments that require you to jump into the unknown. To realise your vision, you have to actually get started. Creating a clear vision and goal is critical to ensuring that when you leap into the unknown, you land safely.
For me, my purpose has been clear from the beginning – to keep fundraising and leading Neuroblastoma Australia until there is a cure. At the beginning, I thought we would make a bigger impact a lot sooner. What I have learnt over the last 15 years is that realising your goal takes phases. Finding a cure will take time. So, while this remains the overarching goal, we have realised we need to celebrate the small wins along the way, otherwise it would be easy to lose hope and motivation to continue. Each year, we may achieve incremental gains in survival rates. To celebrate this, it’s important to take the time to step back and realise that while there may not be a cure yet, more children are surviving, and we are offering really valuable support to families affected.
Resilience is required
Often, people ask me, how do I keep going? Working every day on a cause that is so emotional and has touched me profoundly, it may be difficult for others to understand how I continue and remain motivated. I’m not going to lie and say it is easy to keep going all the time. It can be hard to keep going. At the end of the day though, it’s my passion and knowledge that my daughter wouldn’t want me to throw my life away – she would want me to do something constructive with it.
While it can be difficult, looking on the positive side of things is necessary to staying motivated and on-track. Understanding that down moments and bad periods in your life don’t last forever. You have a choice of surviving or not surviving. I always remind myself that I have been given this life and I must make the most of it. Always consider the ultimate goal of your life and business. Don’t let the small things cloud your journey.
In saying this, to build resilience is to also take time for yourself. To do something different other than your work and business. I find physical activity extremely helpful as it forces you to remain in the moment. Listen to your body and mind – understand and recognise the signs when you’re doing too much. From there, you can build time into your week just for you. Build space to unwind and detach from your work goals, commitments, and other stresses of life. This can often be harder than you think to do so, but by doing it you will see long-term success and consistent motivation. Even when Sienna was going through treatments and would be constantly crying out for me for comfort, I had to force myself to lie in bed and take a nap. I wasn’t helping her or my husband by being overtired and barely functioning.
It’s also critical to be realistic with your goals in order to be resilient. I would have made it much more difficult for myself if I had set a goal to cure Neuroblastoma within five years. How can you be resilient in business if your goals are unrealistic? You’re simply setting yourself up for failure. While it’s important to have large, overarching goals, you must also be realistic about how and when you will achieve them. Understanding your own limitations about what you can do will ensure you don’t burn yourself out unnecessarily. Be guided by your passion but don’t let it blind you into setting impractical goals.
My mission has always been to find a cure for Neuroblastoma. This will never change until I achieve it. I am proud of the not-for-profit I have created and the work we do every day to fund research. The fact that we have made clear progress funding really good research is amazing. Reflecting on what we have achieved, I am proud of it. Although this does not mean I don’t want to achieve more.
Starting as a small organisation that wasn’t even set up as a properly recognised not-for-profit foundation at the beginning, I can’t believe what we have achieved and continue to achieve. We use our funds effectively, we do everything with the utmost professionalism, and we invest in great research. At the end of the day, I am proud because we are very good at what we do and we’re making a real, lasting impact in the fight to save children’s lives.
To take the leap of faith your business requires, to become resilient and to ensure you maintain your motivation for the long-term you need to identify your passion. So, ask yourself – what are you passionate about?
The children facing Neuroblastoma are a silent minority and my voice isn’t enough – others need to help. If you want to find out how you can help, please visit the Neuroblastoma website.