Emma Betts' legacy will live on

17 May 2019

The inaugural recipient of the Emma Betts PhD Scholarship is Jordan Conway.

Jordan currently works full-time at Melanoma Institute Australia, and will step back from his role as Project Officer/Research Assistant when he begins his PhD in July.

“I’m the age Emma was when she passed away. It almost feels unfair, that she has to not be here for me to be able to do this. But I will use this opportunity to push as hard as I can to reach our collective goal of zero deaths from melanoma.”

JORDAN’S STORY

Jordan’s journey to his PhD wasn’t straightforward.

He always found biology fascinating, and after doing a nursing course in high school he decided that helping people was what he wanted to do. He did medical science at university aiming to continue on to medicine to become a doctor. But his curiosity got the better of him.

“During uni, I noticed that all the greatest leaps forward were because of research and I loved the idea that I could both help people and be academically and intellectually challenged at the same time.”

He applied to do an Honours project after his undergraduate degree finished. After a year of 48-hour stints in the lab and a 15,000-word thesis on cells in a petri dish, some of the glamour of the lab life wore away. The lack of a tangible, real-world outcome and loss of a direct link to people made Jordan question whether research was for him. He decided to take some time working before he chose medicine or research.

Jordan came on board at Melanoma Institute Australia in 2017 as a Biospecimen Bank Officer at Westmead Hospital, where he worked with patients who generously donate their tissue and blood to research at MIA.

“I saw so many patients and formed relationships with many of them. I sat in on their appointments, I spoke with them while they were undergoing treatment – I even held a patient’s hand during a biopsy. I got to see the incredible successes of melanoma treatment, only to have other patients I had seen almost every week suddenly no longer return to clinic because their treatments weren’t working. I cried when one patient was told to go home and get his affairs in order over Christmas.

“I became desperate to do more.”

When a position opened in MIA’s translational research group, Jordan jumped at the chance. He was now tasked with assisting all of the research projects by combing through patient data to select the best samples for research. Being exposed to some of the world-leaders in melanoma research rubbed off on him.

JORDAN’S PHD

Spending time in the unique, multidisciplinary team that is the translational research group, Jordan realised that the research at MIA was especially patient-focused – exactly the research he had been drawn to at uni. Inspired by conversations with one of MIA’s clinicians-turned-researchers Dr Ines Da Silva, Jordan found a project idea that he wanted to make his own.

One person every five hours will die from melanoma in Australia. It is the most common cancer in young Australians aged 15–39 years old. While 90% of people with melanoma are able to be cured by having the primary melanoma removed through surgery, in the other 10% of cases, life-threatening spread will have already occurred.

Over the past five years, the use of surgery, targeted therapies and immunotherapies have significantly extended life expectancy in people with advanced disease (where the melanoma has spread to other organs). In a recent MIA-led trial, researchers have made a major breakthrough by tripling the life expectancy for some advanced melanoma patients. However, up to 50% of patients are either innately resistant to current treatments or develop acquired resistance throughout the course of their treatments. One group of these resistant patients are those who have developed metastatic disease to their liver.

Jordan’s research will look at mechanisms of resistance to immunotherapy, specifically in melanoma patients with liver metastases. Along with other members of the translational research group, he wants to know why the liver seems to be the gatekeeper of resistance. He aims to determine if it is the site of metastasis that creates a poor systemic response, or something within the biology of the tumour that causes the melanoma to metastasise to the liver and make it resistant to therapy. He is excited by the clinical relevance of this project – in clinical settings, patients with liver metastases tend to have a worse outcome on treatment. Jordan is also hoping that, like immunotherapy, his research could translate to other cancers.

“I can’t think of a better place to do my PhD. Not only am I able to use the amazing resources that MIA has – like the biobank and the research database – but the translational research group has so many people I’m inspired by who are all committed to making a difference, like MIA’s Co-Medical Directors Professor Georgina Long and Professor Richard Scolyer.

“I’m doing my PhD because I believe that every patient deserves the best opportunity to survive this harrowing disease and right now, there are patients that aren’t surviving. I want to know why, but more importantly, do everything in my power to make sure that this isn’t the case forever. Advanced melanoma used to be a death sentence, and through the determination of the researchers around me here at Melanoma Institut Australia, it isn’t anymore. Our mission is zero deaths from melanoma, and I am excited to potentially play a part in achieving that.

“I want to follow in their footsteps and utilise their knowledge and the resources they have available to ensure that the patients that aren’t responding get to spend more time with their families. It’s always about the patients, and I have had the honour of meeting so many of them.”

JORDAN IS DETERMINED TO HONOUR EMMA’S LEGACY

When applying for his PhD, Jordan realised that without a scholarship, he wouldn’t be able to give all of his time to his research. No stranger to hard work, Jordan thought about getting a night or weekend job to ensure he could pay for his day-to-day expenses – his phone, his food and his transport to and from the lab each day. Then, the Emma Betts PhD Scholarship came along.

During her illness, Emma was an ardent supporter of Melanoma Institute Australia. She knew research was the key to saving lives from melanoma, and she selflessly devoted her time to raising awareness and encouraging Australians to support research. She started Through the Looking Glass, which quickly became an annual event. Two years after her passing, it is still run by her parents, Leon and Tamra, who are determined to continue Emma’s legacy. Melanoma Institute Australia is delighted to honour Emma by creating the Emma Betts PhD Scholarship, to ensure up and coming young researchers with the same vision as Emma, are supported in their work.

Jordan, who followed Emma’s blog and had long heard of Emma’s dream for a cure for melanoma, is a fitting inaugural recipient of the Emma Betts PhD Scholarship.

“I’m so grateful to receive the inaugural Emma Betts PhD Scholarship. This scholarship means that I can devote the next three and a half years of my life to this research. I can focus day-in and day-out on trying to solve this problem that affects far too many people.”

It’s fitting that Emma’s legacy is allowing a young person much like her to fulfil their dreams.

Jordan will be guest of honour at the Through the Looking Glass event on Saturday 18^th May in Brisbane. Emma’s parents are urging supporters to purchase tickets as soon as possible, to ensure Emma’s legacy can live on.

16 Dec 2020

A message to all Australians from melanoma patient Stuart Taylor

Stuart has advanced melanoma which is not responding to treatment. He has shared his story on ABC's 7:30 in the hope that others can escape the same fate.

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