News

In honour of Michael

16 Feb 2023

Working at RCA is more than just a job for Corporate & External Relationship Manager, Nikki Kerr.

At age 40, Nikki's husband Michael passed away from an extremely rare cancer known as MPNST (malignant peripheral nerve sheath tumour of the trigeminal nerve). Her family's experience in the Australian health system is the reason she gets up for work every day – to help ensure that no other family has to go through what they did.

"I never really had to navigate the health system before Michael got sick, I had no idea how it worked. I felt lost and helpless with two toddlers and a sick partner. I was luckier than most as Michael's best friend was a doctor; he helped me research and navigate the private and public systems. Without this help, I would not have known where to begin. Unfortunately, even with his help, our journey was complicated, confusing and full of barriers and challenges.

"I look at the Patient Support Team within RCA and know that our journey could have been very different. It would have been life changing to connect; with support groups at the time, and to have access to the team’s in-depth guidance and knowledge of the health system.”

Nikki joined the RCA team three years after Michael's death, determined to apply 25 years of senior business development experience and professional development across various sectors to the world of rare cancer. She is now undertaking a Diploma in Public Health Support to learn more about how all the elements of the health system fit together.

A key part of her role is building awareness of how RCA supports people living with rare cancer and how we help drive change for patients.

"When I visit our partners, we talk about the impact they can have on people by supporting our work, and I let them know that we are here to help. Through my role at RCA, I often hear people's cancer stories and how they have lost someone they love. More often than not, I hear, "I wish I had known about RCA earlier."

Another key part of Nikki's role is to stay in constant dialogue with partners about the advances in new therapies coming to Australian patients.

Nikki and her children atop Mt Kosi

"It's all about improving access for patients. We all want to see people living with cancer have the fastest possible access to the treatments they need. By building strong external partnerships, we can help keep the patient at the centre of every conversation and advocate for what our patients need when we see things that aren't serving them."

This March marks eight years since Michael passed away. Nikki and her children will join RCA's biggest fundraiser, the Kosi Challenge, in honour of Michael and all the other Australian families with a similar story.

"It's always an emotional event for more reasons than one. The Kosi Challenge is a great equalizer. No matter what your position is, no matter what you earn, whether you work in pharma, health technology, or are a friend of a person living with cancer – we're all there to conquer the same mountain. It’s humbling to walk alongside the people our work impacts; it’s’ a powerful reminder that what  we do every day really counts."

For more information on how RCA can support people living with rare cancer and their families, see How We Can Help.