At a personal level, I would describe myself as an Active Lifestyler, Villager & Entrepreneur. Love road cycling, running, and the coffee bull sessions that follow. I am a pretty aspirational guy. My best attribute is probably the ability and determination to always find and make that next step forward no matter how small or insignificant it may seem in the moment.
More recently I became a Cancer Super-Responder, by overcoming an unbeatable stage 4 terminal cancer called Cholangiocarcinoma (Liver/Pancreatic). My result is a historic modern-day medical miracle breakthrough, similar to the discovery of Penicillin.
My most unlikely success was the result of Dr. Matthew Burge, Merck California’s International Keynote trial 158, and 2018 Nobel prize winner Dr. James Allison, who discovered the “Immune Checkpoint Pathway.”
I became the 2nd of 3 patients globally to have ever achieved this result on an immunotherapy trial. It also placed me into the, 1% of the 1% of all terminal cancer patient survivors.
Experience has taught me that having my passion & purpose aligned, allows my willingness to rise up from within.
It’s an alignment that gives oxygen and momentum to my dreams, and the visions and aspirations that rise up from them. It gave them a pathway to reality.
What I do
Creating the future village.
A Village for the Villagers, by the Villagers.
In 2013 I co-founded a nimble and now non-profit organisation focused on creating the future Village, and Localism leading Globalism.
Our primary mission is to create smarter more vibrant villager environments from within the grassroots of their larger more disconnected community parent.
Why a Village?
Simple – It’s real
Villagers rally around shared values, and the collective visions, and aspirations that rise up from them. It’s we villagers that build our village, a special place where everyone knows your name, and word of mouth has high value. This understanding is a critical and enduring distinction.
How we do this
Simply put, we help create the reality by giving the village visibility, voice, and momentum. We resurrect the village story – we give it oxygen to breathe and room to play, the opportunity to become the best it could possibly be. This is a strategy that applies equally to individuals, communities, and businesses. It adds another superior layer of value above and beyond the crowd, a beacon that attracts otherwise unseen opportunities and benefits.
Become part of our success equation
I think that is something worth getting behind, so jump on and join us, become a Villager or a friend of our Village initiative – be part of something special that moves the needle and makes a measurable difference.
What I did before that
I ran a very successful family commercial property fund that focused on developing urban retail and industrial village environments.
Then the Cancer hurdle
In November 2016, I was given a terminal cancer diagnosis (Liver /Pancreatic) with 6 months or less to live. I then climb up and over 25 hours of significant life-threatening surgeries to removed multiple organs in an attempt to stop the cancer. But it came back hard and fast, (as predicted) spreading throughout my liver and lungs.
I was now metastatic stage 4, and very near my end of days, when I was unexpectedly thrown a “Hail Mary Pass” by Dr. Matthew Burge and Merck in California.
With only weeks if not days to live, I signed the most important document that anyone could ever sign – with the help of my oncologist who held the pen upright in my hand and my wife Claire holding my body in a seated position, I moved my hand with all my effort. I made the cut and onto the trial before the cut-off time. I had joined the trial knowing that no other CCA patient had ever succeeded.
This was the pass I had to catch, or it was all over red rover for me
Amazingly I did – I responded almost immediately. Stunningly, it took just 3 days to respond and in doing so become part of a modern-day miracle cancer cure equation. The pathway and circumstances that lead up to this “Hail Mary pass is a story in itself – without which I would have died even sooner.
“Steve, cancer has taken so much from you, but it can also give back so much more if you let it” – Erin
Erin was my very first trial nurse, she tried so hard to smile for me, it’s gotta be so tough when you see someone in your care slipping rapidly away from the living. I could not lift my head to acknowledge her words, but I do remember thinking geez Erin are you nuts – what drugs are you on? Well, I can say those few words really got to me, I didn’t know where to file them – they kept at me until the penny finally dropped. – “If you let it” – If I allow my mind to see beyond the now, perhaps my body will follow? – Erin’s simple words have become who I am, and how I function. With vision, I can do magic – without vision, there is nothing but an abyss.
When you face drawing your last breath, you see what you are losing, you see what you did not see before, you see what others cannot.
What saved me seems so obscure and lacking reality, yet it was real to me – “Anything and Everything is possible, as long as I remain open and willing to its reality. It allows the raw innate willingness to rise up from within – like a bright beacon so that Opportunity and Luck can always find their way to me.” I think we are all born with this, it just took a tragedy to turn it on.
You have to remember when you are in a tight spot, others mostly cannot see what you see – it’s your reality and you have to work it. You cannot get distracted by those who cannot share what you see.
Lemons to Lemonade
Yes, cancer changes your life for the better, if you let it – thanks, Erin!
Now equipped with a very intimate knowledge of cancer, mutations, clinical trials, and highly targeted immunotherapy interventions, I began developing what I had learned into something that I could practically contribute to saving some else’s life. I could create contribution and relevance from all this chaos I had lived through.
As the story of my survival seeped out, patients and their caregivers reached out to me from all points of the globe – they followed the keytruda and mutational pathway to my door (Facebook messenger) seeking to connect with someone the same as them. They wanted to know what I know, perhaps a magic pill of information that could save their life. We were connected by a specific cancer type, and then further filter into a match by a specific mutational signature. Yes, a type of mutational tinder. The future success of cancer treatment is targeting the exact mutation that is driving the cancer growth – no matter where it is in the body.
This unique and intimate knowledge lead me to develop what I maintain is a world-first – a Peer to Peer Mutational Match Making platform, where patients from anywhere on the globe can be matched and connected by their exact genomic mutation signatures.
For the benefit of these too healthy to understand
When you are a patient and all options seem at an end, the value of connecting with someone exactly like you (Mutationally) is the most powerful elixir of hope on the planet. This application will save lives because the medical profession cannot achieve this at the grassroots level – patients can.
Dr. James Allison’s (2018 Nobel Prize winner) *Checkpoint pathway inhibitor breakthrough, turned fiction into fact, opening up the relevance of genomic profiling of a patient’s biopsy, by using NGS – Next-Gen Sequencing.
NGS provides researchers and pharma companies a window on developing new highly targets drug interventions such as immunotherapies that use the body’s own immune system to eliminate the cancer, it also provides the treating physician with a precise treatment road map that targets and eliminates the exact mutation driving a cancers growth.
This is, without a doubt, the biggest breakthrough since penicillin, and what’s more, this is only just beginning.
*Checkpoint Pathway Inhibitors (drugs) block the messaging pathway that tumors use to trick the immune’s T Cell army to not attack. By blocking this pathway the brakes are removed from the T Cells, and they then attack and destroy the tumor.