Last weekend, I attended the ALK positive summit in Philadelphia, and I had an amazing time. I took part in a panel discussion about having difficult conversations with friends and family. I also met with Genentech, the company behind the medication I take, and shared my story, which was videotaped. I had the opportunity to learn about all the research and developments for ALK positive lung cancer. But without a doubt, my favorite part was being surrounded by people who know exactly how I feel without needing any explanation. I even got to meet some of them in person, people I had previously only talked to over the phone, Facebook, or Zoom.

I’m thoroughly impressed with ALK positive as an organization. It’s a real nonprofit, with a board and executive director that raise money and awareness, and advocate for more research. They even have a medical committee that gets ALK specialists to give presentations over Zoom to educate us about ongoing research. In addition, there’s a Facebook support group and within it, a healing arts program that provides support and various outlets for both caregivers/partners and those diagnosed with ALK.

Two decades ago, this disease came with an 18-month life expectancy. People were too sick to organize at this level. Thanks to research and targeted treatments, we are now able to live healthy enough, and long enough, to do things like this—something I directly benefit from.

I attended the summit with the goal to make a name for myself within this organization & community, and I feel like I succeeded.

I wanted the board to approve my half-marathon registration for the charity half marathon within the LA marathon. I needed to prove that I could organize and manage a running group, and on our 2nd night there Lonna, the executive director said to email her and that she would approve it and get the needed paperwork to the necessary people.

While speaking with the Genentech representatives, I realized that my story is powerful, and that I can use this experience & my story to advocate.

My fears of public speaking began to dissolve this weekend, as I recognized this is what I’m meant to do with my disease: be an advocate, meet with pharmaceutical companies to humanize their research, and encourage further investment in more research. I want to fundraise for ALK positive so they can support more research through grants.

This isn’t something distant from me; it’s raising awareness, fundraising, and advocating for something that directly extends and enhances the quality of MY life.

This weekend allowed me to find my place and purpose within my cancer journey.