I feel like I’ve just won a trip to the Oscars and I’m headed to Hollywood.
That’s what attending the International Association of the Study of Lung Cancer (IASLC) World Conference on Lung Cancer (WCLC) in Yokohama Japan means to me - it’s a dream come true! Spending 4 days at a conference about lung cancer may not sound like the red carpet to most, but this is truly my Hollywood, and the stars are all the brilliant minds that come together, share information and collaborate to further lung cancer research.
When I first got involved with lung cancer advocacy in 2001 I wasn’t a patient, and very little was happening in lung cancer research, so my focus was on fundraising and building a large, caring community. In 2007, I became more passionate about research. Not only because I was president of LUNGevity, but because there were finally breakthroughs, exciting discoveries and advancements in lung cancer treatment. In 2009, I became a patient and suddenly research was my lifeline.
I started attending more lung cancer conferences, went through Research Advocacy Network’s training and attended the American Society of Clinical Oncology (ASCO) annual meetings. I have served as a peer reviewer for the Department of Defense Lung Cancer Research Program for the past six years. I sit on committees as a patient advocate, I recently co-authored my first journal article and I am always looking for ways that I can help support and further research as a patient.
While the meetings are designed for healthcare professionals, the presence of patients reminds everyone of the importance of the work to be done and the lives affected. We bring a face to research and humanize it. We remind them that we are not just a disease or data; we are people with families and lives to live. We are people looking for hope. We help researchers and clinicians see the forest through the trees because the science can be exciting, but our presence and our voice helps them see through the lens of impact, side effects, financial toxicity, quality of life, etc. Research is our future. The urgency in our voice can, and should, drive the critical research questions that truly matter, that will have the most impact and that will prolong and save the lives of lung cancer patients.
Science has never been easy for me so I definitely have to labor through the biology, chemistry, statistics and acronyms to understand what is happening in the research world, but in most cases my purpose is to understand and critique on the clinical benefit for patients. This work is important to me on so many levels including directly affecting what studies are funded and making sure they are patient focused. But it also gives me a purpose. I had no control over losing my parents to lung cancer, or my own diagnosis, but being an advocate gives me a sense of control and an opportunity to reinforce the need to accelerate progress in lung cancer research.
IASLC’s WCLC is the Big Daddy of all lung cancer conferences. It is the world's largest meeting dedicated to lung cancer, attracting more than 7,000 researchers, physicians, and specialists from more than 100 countries. The goal is to increase awareness, share information, collaborate, and to help participants implement the latest developments across the globe. Under the motto “Synergy to Conquer Lung Cancer," the conference will cover a wide range of disciplines and unveil several research studies and clinical trial results.
As a patient research advocate, the meeting is more than just hearing about advancements in research and learning about new standards of care. It’s also an opportunity to connect with clinicians and researchers, and ask questions. It’s a chance to meet other advocates from all over the world. Cancer can be very overwhelming and seem too complex for many patients and their families to understand. It is our responsibility as patient advocates to bring the information we learn back to our communities in a way that they can understand and help them to make more informed treatment decisions. And it is our honor to do so.
The bonus of attending this year’s WCLC is that my favorite superstar(s) will receive an honor equivalent to an Oscar - and I will be there to see it live! My oncologist, Dr Phil Bonomi, and his team will be receiving the Inaugural IASLC Foundation Cancer Care Team Award! The award recognizes outstanding patient care and honors multidisciplinary teams working together to provide the highest quality cancer care. My team has always been patient-centered and is so deserving of this award. I submitted my three page nomination before knowing I was going to attend the conference - coincidence or fate that I happen to be going to Japan? It feels like fate to me.
How I got this incredible opportunity is a fairytale in itself. It is a story of genuine kindness and generosity. To make a very long story short, my fellow survivor friend and advocate Ivy Elkins and I were at a party for a mutual friend. A complete stranger (at the time) asked us our connection to our friend and then about the advocacy work we do. By the end of the evening he was insistent on sending us to Japan for WCLC. It really was that simple — and incredible!
On the news we often hear stories of random crimes perpetrated against strangers, but rarely do we hear stories of generosity and altruism. In a time when the world seems to be marked by senseless violence, a random act of kindness and generosity from strangers, or someone we don’t know well is beyond heartwarming. Indeed, the kindness of strangers does more than merely warm the heart; it transforms lives.
Hollywood (Japan), roll out the red carpet — here we come! Stay tuned for live updates from the conference…
Jill will be tweeting from the LUNGevity twitter account in Japan—follow @LUNGevity for updates!