ALK Positive Australia

We are a charitable organisation founded by a group of ALK Positive patients and caregivers. Our aim is to connect, educate and raise funds to help ALK Positive patients and their care teams in Australia.

About

What is ALK Positive?

ALK-positive cancer is a type of cancer with no known cause and no known cure.

This rare type of cancer is caused by a mutation of the ALK gene. Importantly, this gene mutation is not hereditary so does not get passed down through generations.

The most common type of ALK-positive cancer is in Non Small Cell Lung Cancer but it can sometimes be found in other cancer types.

It is estimated that around 100,000 people worldwide each year are diagnosed with ALK Positive cancer, with approximately 95% of diagnoses occurring at Stage 4, where it has spread (metastasised) to other organs.

Sometimes referred to as the “lucky lung cancer” (we still don’t believe there is such a thing!), ALK Positive treatment options vary from many other cancers and can include Tyrosine Kinase Inhibitors (TKIs), a daily medication, which can inhibit cancer growth for a number of years.

More research is needed to help prolong the lives of our ALKies (nickname for ALK Positive patients).

What we are about

Patient support

One of our key aims is to make sure that all ALK + patients, and their caregivers, do not feel alone. We all had first hand experience of that feeling when looking for information on our rare cancer mutation and we are here to say “you are not alone”.

Education

Knowledge in the world of ALK positive mutation is ever increasing. We will share information we find through links to help people make informed decisions about their treatment and support.

Fundraising

Our aim is to raise funds and use them in research that will benefit Australian ALK + patients. There are other ALK Positive charities around the world that do great work however we would like to make sure that Australian specific needs are not missed. Where we share a common goal with other international charities, we will share our support.

Your donation drives hope, research, and support

You are not alone!

Below are some personal accounts from patients and caregivers highlighting their ALK journeys and the need for support, awareness, and a locally-focused community in Australia.

In 2018, when my husband was diagnosed with lung cancer, I remember the thoracic surgeon explaining to us that if we did nothing he wouldn’t be here in 9mths. Receiving that news when my husband was in his early forties and we had twin 9yo boys, was devastating.

Finding out his cancer was ALK positive gave us a little bit of hope along with a million more questions.

Finding the worldwide ALK+ Facebook page was an incredible source of information that really helped us advocate for ourselves and for his treatment options.

There was a wealth of information however a lot wasn’t relevant to us in Australia which made it time consuming to find the parts that could help. This is part of the reason why we developed this charity in conjunction with our fellow ALKie families.

– Alison H

After being diagnosed with ALK Positive Lung Cancer, like many other ALKies I turned to the internet as source of information on this rare type of cancer. All the information I found was from overseas. There was no connection to Australian medical experts, research or patients and caregivers in Australia.

I saw a need for a not-for-profit organisation that would raise public awareness and fund medical research into the treatment of ALK Positive cancer in a way that was reflective of Australian patients, our families and our health system.

By establishing ALK Positive Australia we have made it possible for all Australians to support ALK Positive research with donations made within Australia now able to be tax deductible.

– Jon G

I was 44 when my world turned upside down with a diagnosis of prostate cancer. Before I could even process it, a pre-surgery scan uncovered a second battle ahead—ALK Positive Non-Small Cell Lung Cancer.

I went through surgeries, radiation, and chemotherapy, and for a short time, I held on to the joy of being cancer-free—until the lung cancer returned in my lymph nodes.

That was over seven years ago. Today, I’m grateful to say I’m cured of prostate cancer and I’m holding my ALK+ lung cancer at bay with TKI’s I take twice a day.

Through this journey, I’ve seen how uneven the support and understanding can be. Lung cancer—especially rare types like ALK+—needs more awareness, compassion, and community.

– Graham H

In April 2022 my seemingly healthy, non-smoking husband was diagnosed with Stage 4 lung cancer with metastasis in the brain.

The long month from biopsy to result advice was the hardest month of my life. Confirmation of the ALK+ mutation gave us hope, and we scoured the internet for medical journals and research papers trying to better understand this diagnosis. Frustratingly there was very little information available, and anything that could be found was US based & often not applicable to Australian patients and our health system.

It was a time of overwhelming fear & profound loneliness.

This should not be the experience of the newly ALK+ diagnosed in Australia, and this patient & carer driven charity aims to change that.

– Amanda N

Latest blog posts

News, breakthroughs, and lived experiences

Activities

Nutrition and Wellness

Nutrition and Wellness: Building a Healthier You, One Bite at a Time In today’s fast-paced world, where convenience often takes

Aussie ALKie

Health

New ALK Inhibitors

New ALK Inhibitors: Advancing Hope in Lung Cancer Treatment The fight against cancer is constantly evolving, and in recent years,

Aussie ALKie

Health

$50K Inspirational Grant Funded

ALK Positive Australia has raised $25,000 to fund vital research. This grant will accelerate progress towards better treatments and outcomes

Aussie ALKie

Donate

Your donation drives hope, research, and support.

ALK positive lung cancer is a rare form of non-small cell lung cancer caused by a genetic rearrangement in the ALK gene. At ALK Positive Australia, we work to support people diagnosed with this condition, advocate for better outcomes, and help fund cutting-edge research for targeted treatments.

We gratefully acknowledge the generosity of all our donors and sponsors who make our mission possible.

Get in touch

Let's discuss how we can help.

Whether you’re looking for support, want to get involved, or have a question, we’d love to hear from you.

We’re proud that others including individuals, families, and organisations believe in our mission. Together, we’re making ALKies lives better for the future.