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.
Visit our Donate page to discover more about our current fundraising focus.
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 (metastasized) 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 (TKI’s), 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”.
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.
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.
OUR STORIES
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
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
I was 44 years old and was just diagnosed with prostate cancer when a pre-surgery CT scan revealed I had another primary cancer, this time in my lung (ALK Positive Non Small Cell Lung Cancer). After surgeries to remove both cancers, then radiation and chemotherapy aimed at my Lung Cancer I was cancer free for a short time before the lung cancer returned in my lymph nodes.
It has been nearly five years since my first diagnosis of cancer and I am cured of Prostate Cancer and am keeping my ALK Positive cancer at bay with the help of Targeted drugs (TKI’s) that I take twice daily.
During this time I have experienced a vast disparity of support and information between my two cancers. Lung Cancer and our rare type ALK+ needs more attention, support and general understanding. That is why we are here, to help those unfortunate enough to be an ALK-ie and their families. No one should feel they are doing this alone.
– Graham H