About Us

ALK Positive Australia inc.

ALK Positive Australia Inc. was founded by a group of ALK Positive patients and caregivers who want to reach out and help other ALK Positive people and their loved ones. We know that no one has the answers yet of “why” or “what” causes this mutation but we do know how to inhibit it. We are here to fundraise for research that will help Australian ALK positive patients and provide support, insight and tools where we can.

Our charity started with three patients and their spouse caregivers. Our greatest aim is to help other ALKies through funding research and providing education and support.

ALK Positive Australia Inc is a registered charity with the Australian Charities and Not for Profit Commission (ACNC) and is endorsed as a Deductible Gift Recipient (DGR) meaning all donations in Australia are tax deductible.

Goals

The Founders' Story

In 2021, three Lung Cancer patients with the ALK Positive mutation and their partners shared a similar frustration. There was no easy way to donate to ALK Positive research in Australia.

Other charities existed and they were doing great work, but none of them dedicate their funds to ALK Positive research in Australia or for research which specifically benefits Australian ALK+ patients. This is where the idea for the charity ALK Positive Australia Incorporated was born.

Another key goal of the charity was a way to find other “ALKies”, so no one with this rare cancer felt alone. It is estimated that, in Australia alone, there are around 500 people diagnosed each year with ALK Positive Lung Cancer.

The founding executive team were assisted and worked with the USA based ALK Positive Inc, Thoracic Oncology Group Australasia (TOGA), Lung Foundation Australia and International Association for the Study of Lung Cancer (IASLC) to not only learn about breakthrough research for ALK Positive patients but also where to deliver funds that best meet the needs of Australian ALK+ patients.

On 30 October 2022, ALK Positive Australia Inc was officially registered with the ACNC. Whilst ALK Positive Australia Inc is still young, we hope to grow membership and support to allow its continued growth and success in the future to assist all those affected by ALK Positive mutation.

Graham and Alison

At 44 years old, Graham was diagnosed with incurable lung cancer—a reality that impacted not only him but his entire family. His family included his wife, Alison, and their twin boys, who were eight years old at the time. Feeling alone and overwhelmed with information, Graham and Alison drew on their professional backgrounds in technology and science to support others facing similar challenges. Together with the other founders, they established ALK Positive Australia Inc.

Jon and Amanda

When Jon was diagnosed with ALK positive lung cancer, he searched online for answers just like many others. But almost everything he found came from overseas. It was hard to connect with Australian doctors, find local research, or hear from people facing the same challenges here. Amanda felt the same way. She saw the gap and shared Jon’s frustration. So together, Jon and Amanda decided to make a difference. They with the other founders have created a place for trusted local information and real support for people affected by ALK positive lung cancer.

The Current Executive

Dr Jon Graftdyk

Chair

I was diagnosed in 2022 with Stage IV ALK+ lung cancer and have been working as a passionate consumer advocate for people living with ALK+ lung cancer ever since. I bring both lived experience and strong connections across the patient community.

As Chairperson of ALK Positive Australia, I work to ensure the voices of patients and families are heard in research, policy and access to treatment.

With a scientist’s brain and a campaigners heart, I take a deep interest in emerging treatment strategies, surfacing fresh research angles and pushing the boundaries of what’s possible in the treatment of ALK+ lung cancer care.

I contribute to national and institutional lung cancer initiatives through multiple roles, including serving as Consumer Representative on the TOGA Scientific Committee and as a member of the TOGA consumer panel, where I help shape lung cancer research priorities.

I am also part of the Peter MacCallum Cancer Centre Consumer Register, providing input into clinical research design and volunteer with Cancer Council Victoria’s Cancer Connect program offering peer support to others facing lung cancer.

In addition I am a member of the Cancer Cancer Victoria’s Community Advisory Network, where I collaborate on ways to improve cancer care and support services.

Dr Lisa Briggs

Deputy Chair

I’m proud to be a nationally recognised advocate for people living with ALK-positive lung cancer. In 2014, just weeks after giving birth to my second child, I was diagnosed with stage IV lung cancer at only 32 years old. Thrust into a world I never expected, I’ve spent the past decade defying the odds and dedicating my life to creating change.

Along the way, I’ve been humbled to receive recognition for this work, including being named a top 4 finalist for Victorian Local Hero in the 2020 Australian of the Year Awards and receiving the 2025 Jeannie Ferris Award from Cancer Australia. My advocacy has always been grounded in compassion, inclusion, and action.

I’ve been privileged to serve in leadership roles with Lung Foundation Australia, Rare Cancers Australia, the Thoracic Oncology Group of Australasia (TOGA), and now here at ALK Positive Australia. I’ve also worked to ensure the patient voice is at the centre of national research efforts, which includes the liquid biopsy clinical trials DYNAMALK and ASPiRATION-2L as well as the TRACKER Lung Cancer Biobank.

As a strong believer in equity and access, I’ve lobbied the Australian Government to secure PBS listings for ALK targeted therapies and to extend prescription lengths, reducing the treatment burden on patients and families.

Most importantly, as a mother, wife, and long-term survivor, I continue to fight for equity, access, and hope for everyone affected by lung cancer, especially those of us living with ALK-positive disease.

Amanda Nickells

Secretary

As Secretary of ALK Positive Australia Inc., I am deeply committed to advocacy and research driven by a personal connection.

My husband Jon was diagnosed with ALK-positive lung cancer, a rare and terminal disease that transformed our lives. This experience inspired me to help co-found the charity to support patients, families, and caregivers while raising funds for vital research.

I believe every donation brings us closer to better treatments and hope for all affected by ALK+ cancer.

Thanks to the incredible generosity of our supporters, we recently announced a joint research grant with TOGA specifically for ALK-positive lung cancer. In just one year, we have turned donations into real progress.

Leading these efforts as Secretary is both an honor and a responsibility I hold with gratitude, dedicated to ensuring no one facing ALK-positive cancer feels alone and that hope always remains alive.

Alison Hall

Treasurer

In 2018, my husband was diagnosed with ALK-positive lung cancer. At the time, he was in his early forties and we had nine-year-old twin boys, so hearing that he might only have months to live was devastating. Finding the global ALK+ Facebook group gave us hope and crucial information to help us advocate for his care, but much of what we found wasn’t consistent with treatment options available in Australia.

That gap became one of the key reasons we decided to help establish this charity with other ALK+ families.
We wanted to build a trusted resource for Australians living with ALK-positive lung cancer and their families—a place where support, information, and community could be found without having to search endlessly.

My professional background is in medical science and health care management. This experience has been invaluable in navigating the health system and shaping the work we do to better support patients and families.

Anita McGrath

I was diagnosed with late-stage ALK-positive Non-Small Cell Lung Cancer in 2014. Not long after my diagnosis, I began advocating for others living with lung cancer, determined to use my experience to help create change.

Over the years, I’ve had the opportunity to work alongside not-for-profit organisations and government health departments as part of my advocacy. I’ve also been involved in research as a consumer representative with the Thoracic Oncology Group of Australasia (TOGA) and Lung Foundation Australia. Currently, I serve on the executive committee of ALK Positive Australia Inc. and I’m a member of the consumer advisory group for Rare Cancers Australia.

Part of my role also involves providing consumer input on grant applications and reviews, ensuring the patient perspective is heard and considered at every stage.

I have a professional background in accounting, which has helped me bring an analytical and practical lens to my advocacy work.

Graham Hall

Since my diagnosis in 2018 with both prostate cancer and ALK-positive lung cancer, I quickly noticed the stark differences in survival rates, support, and levels of care between the two, which motivated me to share my story and use my experience to support others as a patient advocate for lung cancer.

Over the years, I’ve spoken publicly about my experiences and contributed to discussions around improving care, including at events with Lung Foundation Australia and in meetings with policymakers. I’ve attended national and international conferences such as those run by Lung Foundation Australia, the Thoracic Oncology Group of Australasia (TOGA), the International Association for the Study of Lung Cancer (IASLC), and the ALK Summits (virtually).

In 2023, I was grateful to receive an IASLC STARS Education Award, and in 2024, I completed the IASLC STARS Patient Research Advocate program. I continue to advocate for patients by contributing to Research Governance Committees and as a Co-Investigator on clinical trials.

Outside of advocacy, my greatest joy is spending time with my wife, our twin teenage sons, and our lively (and slightly neurotic) Cocker Spaniel, who keeps us all entertained.

John Cannings OAM

I was diagnosed with NSCLC in June 2014, just over 11 years ago, but like many other patients my diagnostic odyssey started much earlier.

It took numerous visits to my local medical centre over a 4 ½ month period before I was finally referred to a lung specialist who recommended that I have a biopsy. I received my diagnosis from the surgeon the day after the operation and this was quickly followed up with pathology confirmation and subsequent FISH analysis confirming ALK positive NSCLC. I met my oncologist on the 4 th of July (Independence Day) and started targeted treatment with a TKI on the next day. Thankfully I am still on a targeted TKI now for just over 11 years.

I am particularly interested in the future potential for genomics and proteomics for both the diagnosis and treatment options for lung cancer and have been advocating for more research in this area. Being a part of ALK Positive Australia helps get that message out to Government, funders and researchers.

Peter Spolc

I am a patient advocate from the NSW Blue Mountains, dedicated to empowering others affected by lung cancer.

After being diagnosed in March 2021 with stage IV ALK+ NSCLC, I actively sought opportunities to understand my cancer and its treatments, engaging deeply with both clinical and research communities.

My goal is to bring this understanding to fellow patients and practitioners alike. I have contributed to the 2022 review of the “Understanding Lung Cancer” and “Living with Advanced Cancer” publications for Cancer Council Australia and serve as a Consumer Representative at the Improving Palliative, Aged and Chronic Care through Clinical Research and Translation unit at UTS.

From November 2024, I am commencing a PhD focused on cancer patient experiences and motivations for proactive health engagement. In 2024, I was honoured to be selected for the International Association for the Study of Lung Cancer STARS program for Patient Research Advocacy.

I regularly attend the Australian Lung Cancer Conference and the Thoracic Oncology Group of Australia Annual Scientific Meeting, and I participate in Cancer Quality of Life Expert Service Team (CQUEST, UTS) consumer events.