Introducing ALK Positive Australia Inc. An interview with Deputy Chairperson, Graham Hall
ALK Positive, Inc has introduced a section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org
In this issue, we are introducing ALK Positive Australia Inc. and have interviewed the organization’s Deputy Chairperson, Graham Hall.
Can you share with our readers the founding story of the ALK Positive Australia? What inspired the establishment of the organisation.
I, like many others, including the other founders, felt at initial diagnosis that it was difficult to find local, relevant information about ALK+ Lung Cancer and I was dubious of heading to Facebook for answers. Australia unfortunately does not have a dedicated Lung Cancer body despite Lung Cancer remaining the cancer with the highest mortality rate of all cancers in the country. Instead, we have Cancer Australia, Lung Foundation Australia, Cancer Council Australia and Rare Cancers Australia. These organisations all have some information about ALK+ Lung Cancer, but a newly diagnosed ALKie has to determine what is relevant and weed out the irrelevant information. This is not an easy task when newly diagnosed.
All of the founders found their way via various means (mine via my wife as I was not a user of Facebook) to the two key support groups on Facebook for Aussies, ALK Positive that I am sure most know about, and the more country-specific group ALK and ROS1 Cancer Australia and New Zealand.
In June 2022, Jon Graftdyk (our Chairperson) asked the question if there was a way to donate to ALK+ research that was tax deductible in Australia. A few responses came back indicating that an Australian entity would need to exist for that to be possible. I had previously had the same question when I was diagnosed a few years prior and thought it was time to investigate how to make this happen. From there, three ALKies and their partners started the work to create ALK Positive Australia Inc. The founders were Ellie Anzalchi and her husband Chris, Jon Graftdyk and his wife Amanda, along with my wife, Alison, and myself.
Using our combined skills, we went through the process of establishing the organisation, registering with various Australian Government departments to register as a charity, establish bank accounts and a web presence. This all took longer than we hoped and expected due to the process often requiring some other steps being completed before the next step could occur. It felt like a frustrating process at times but one that we all chipped away at to ultimately get the job done.
In April 2023 we were finally registered as a Charity in Australia and could accept donations, with ones over $2 having the ability for the Australian donor to claim as a tax deduction. We also launched our website and moved from a temporary email account to our own domain (www.alkpositive.org.au).
Elaborate on the Core Values that drive ALK Pos Aus and how do these shape the organisation?
Our three key values at ALK Positive Australia Inc are:
Education
Advocacy and Awareness
Research and Innovation
We have deliberately left out support as this is an area that is already done extremely well by others, and we don’t want to duplicate what already exists. We want to add value and promote others who provide these services such as ALK Positive Inc and the Facebook support groups. Our focus is connecting people together and answering people’s questions who use the “Contact us” form.
This is where our Education side starts - we want to educate ALKies and the broader community so they are empowered to find science-based information as well as links to support groups and other helpful resources. Some will be seeking a scientific explanation of the disease and others will be after more practical education about managing the disease and the healthcare system. Australia does not always have the same drugs available or offer the same treatment paths as other countries, especially the USA, which can be confusing for people. I have learnt first-hand of the different paths when I was diagnosed at stage 3A and I knew two others of a similar diagnosis, one in the USA and one in Canada, and discovered we all followed very different treatment paths. Such is the nature of different countries’ healthcare systems. For me it was surgery, chemotherapy and radiation and I could not get access to a TKI until my cancer had later metastasised to my neck. I think highlighting and explaining these differences is a very important component for ALK Positive Australia and of any country-specific ALK charity.
On our Advocacy and Awareness, we want to be the first point of call for ALKies based in Australia to find information and/or links to others. We should be the one-stop shop if you like, where an ALKie can get verified links to the relevant information they are after. We want to promote the other organisations giving information while letting other Aussie ALKies know they are not alone, and we are there to assist them where possible. We also want to promote the charity at diagnosis, so ultimately a newly diagnosed patient is handed a flyer with a QR code to our website for more information. Amanda, who is looking after our marketing, has done a great job on this and has created a flyer which is going out via the lung cancer nurses at Lung Foundation Australia. As this is just happening, we are yet to see the results but are hoping to get a better reach to find all the ALKies in Australia that wish to be found.
Our last value, which is probably one of the most important, is Research and Innovation. This is where we aim to direct funds raised through donations. To date, all our costs for the charity have been donated by the founders or the founders have accessed awards/grants to complete components of it. We also understand that, to fund medical research, we would need a medical board to ensure we are fundraising for practical and scientifically-based ideas. With our view not to duplicate what exists, we are talking to partner organisations who already have medical boards and already provide research grants. Our key condition of using a partner will be that it must benefit ALK+ research and optimally benefit Australian ALKies.
Highlight key milestones since its inception - how has it evolved over time?
Our key milestone thus far was the establishment of the charity. The registration, charity status, website and ability to receive donations were the initial focus of our efforts. It all sounds quite mundane - and to be honest, it was - but these steps are the fundamental foundations to future proof ALK Positive Australia Inc. We had to ensure the organisation could exist past its founders and work for future ALKies.
Looking ahead, what is the vision for ALK Positive Australia in the coming years? Are there any strategic goals or projects that the organisation is particularly excited about?
As we are a very young organisation, our strategic focus is simply to grow our membership base and gain as much funding as possible so that we can direct these funds to ALK specific efforts in Australia. These two key items will help the charity deliver more research and provide broader reach, so anyone with ALK+ Lung Cancer in Australia can find the right resources quickly and with ease. I will be excited to see the charity that was created by six founders grow into a more substantial entity that is run with new membership with different ideas and skills.
Lastly, what message would you like to convey to our readers regarding the significance of ALK Positive Australia work and the importance of supporting its mission?
We would not be where we are now without either ALK Positive Inc or the ALK Positive Facebook groups (both International and Australia). It is through open sharing from all parties that joined the six founders together and led us to creating ALK Positive Australia Inc. Our key difference to others is simple, we aim to provide a tax-effective mechanism for donations to ALK research and to provide information that is Australia- focused. We all have the same disease, though our medical options can vary greatly simply due to the constraints of the country’s healthcare system and laws in which we live. While our focus is on helping Aussie ALKies, we are always happy to share and assist any other ALKies in other countries. We are all in this together despite our distance apart.
Interview by: Duncan Preece