Making a Difference – THE ROS1ders PRIME Summit and My Annual LCAM Fundraiser

Back in August, The ROS1ders held our first ever in-person conference, the PRIME Summit. We had originally planned to hold the conference in May of 2020 but postponed it due to Covid. 

The event was fantastic and included presentations by top experts, tours of the labs where they are researching our cancer model project biospecimens, and a keynote by Dr. Ross Camidge. But, I must confess that I was a bit reluctant to help organize and participate this time around. Back in 2019-20, when we were originally planning, I was very enthusiastic about the conference. But for myriad reasons, my enthusiasm had dampened somewhat. Frankly, I boarded my flight to the conference thinking I was doing this for my fellow ROS1ders, not expecting to get much out of it myself.

But, the second I walked into the conference room, everything changed. 

Over the past ten years, I’ve attended countless cancer-related meetings. I’ve never been in a room with more than 5 fellow ROS1+ patients. Our low profile is why we founded The ROS1ders in 2015. A few of us ROS1+ patients connected and realized no one was paying attention to our rare biomarker. We were going to have to fight for ourselves. 

The idea of walking into a conference room bursting with 50 other ROS1der patients (and another 50 ROS1der caregivers) was a pipe dream in 2015 when we founded. But in 2024, it became a reality, and it was remarkable.

Witnessing the robust online community of our private ROS1ders Facebook group has been gratifying. But seeing these people in person – engaging, sharing, and supporting one another – was another thing entirely. I’m not much of a crier, but I sat in the far back row and teared up. To see the fruition of almost a decade of work, building a community to self-advocate, support, and self-rescue, was pretty profound. 

Sometimes it can be easy to doubt the difference we can make. Especially working in the cancer space, where we lose too many, too often, it’s easy to lose faith that anything really matters. In the end, the conference was a huge reminder and a physical manifestation of one of my favorite quotes by Margaret Mead: “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

In honor of Lung Cancer Awareness Month, I am offering my annual Zentangle class fundraiser for lung cancer research. We will be making tangled gift card holders — a great way to personalize a gift card or cash present for the holidays! This class is appropriate for all levels, including those who have never tried Zentangle before. All you need is a willingness to set aside 60-90 minutes to relax and create, plus some basic supplies. The class will be on Zoom, on Saturday 11/16 at 2pm Pacific Time (I will record it for those who cannot attend live). If you would like to learn more and sign up, please go here. 

There is no charge for this class, and I welcome everyone. However, if you are able, I would be grateful if you donated to help fund lung cancer research. (Even if you’re not interested in the class, you are of course still welcome to donate!). Remember, each of us really can make a difference, and it’s even better if we can have a little relaxing fun while doing it. Hope to see you there, and many thanks for your support.