The Legacy of Connie

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How Samuel Johnson Is Helping Solve The True Riddle of Our Times, Cancer

I expected to get more than the usual key takeaway messages from Gold Logie winner and chief flag bearer of the Love Your Sister charity, Samuel Johnson, at today’s Casey Cardinia Business Breakfast. But I didn’t expect to be blown away by a man on a mission who, if successful, will help change the lives of thousands of cancer sufferers and their families forever.

While most people would be aware of Samuel’s and his beloved sister, Connie’s, tireless efforts over many years to raise awareness and funds for cancer research, including Samuel’s herculean 373-day unicycle lap of Australia, many people would not be aware of how the legacy of Connie has evolved from a focus on fund-raising into a relentless mission to revolutionise Australia’s health care system.

Together, Samuel and Connie raised multiple millions through their campaigns. However, it wasn’t until he read a newspaper article two days after Connie’s death in 2017, not written by a journalist but by prominent figures from four of Australia’s foremost medical research bodies, that Samuel realised the true worth of Connie’s legacy.

While Samuel was busy running various fund-raising campaigns, Connie, despite her debilitating and progressing disease, was wheeling herself through the corridors of Parliament House in Canberra lobbying politicians to pass a Bill that would see millions of dollars directed to medical research.

This sent Samuel on a study tour quest to ask cancer researchers ‘what do you need?’. And the resounding response was ‘personalised treatment’. This is an approach to patient care whereby an appropriate treatment is selected for an individual based on human tissue analysis. The current medical model involves testing the efficacy of various lines of treatment on a patient, one at a time over a period of time, to determine the most appropriate treatment going forward. Of course, it can take two, three, four or more treatments before selecting the right treatment, all the while the person’s disease is progressing.

While the technology for personalised treatment is currently available in Australia, it is expensive and not widely offered. Hence, some people are either going, or sending their tissue to, the US for analysis which is where all of the data remains.

So, Samuel is on the road again, this time on a two-year journey around Australia to raise awareness, funds and a grassroots movement to help usher in a new era of personalised treatment. Moves are afoot in the federal government to bring in legislation and release funds in the coming decade but this is not quick enough for Samuel who is pushing for reform now.

Samuel is an actor who uses his craft as a lever to advance his philanthropic efforts to make the world a better place, to ‘vanquish all cancers, now’, as Connie wanted.

The sting in the story was when, two years after Connie’s passing, Samuel finally opened a letter she’d written to him just before her death in which she’d set out her priorities for him. At the top of the list was ‘personalised treatment’.

To find out more about the Love Your Sister charity and how you can help Samuel on his mission, visit https://loveyoursister.org/.

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